Physicians with Heart: Dr. James Nelson
For Tony Nelson, MD, returning to Atlanta, where he spent a good bit of his youth, to work at Children’s Healthcare of Atlanta Heart Center seemed like a pipe dream. He’d always heard that when pediatric cardiologists landed a position there, they rarely left. But in 2019, fresh from a fellowship at Seattle Children’s Hospital, he was offered just such a position at Sibley Heart Center Cardiology. “I was ecstatic,” Dr. Nelson said. “The relationships I’ve formed with others in the practice and with the staff make Sibley stand out as an excellent place to work.” Dr. Nelson was first inspired to pursue pediatric cardiology when he heard a lecture from his professor and one of his mentors at Duke University about fetal heart circulation. Dr. Armstrong, the third black female pediatric cardiologist in the country, gave the lecture that made him fall in love with cardiology and influenced his future career path. “It was remarkable to me at the time to learn how everything worked in concert in the heart to allow blood to flow through it, and then the abrupt shift that happens after birth,” Dr. Nelson said. Dr. Nelson said his colleagues at Sibley all exhibit not…
Sibley Team Takes Care of the Caregivers When Treating CHD
When Mary Helen and Fisher learned about their son’s CHD prenatally, they were given a range of possibilities to consider including that his coarctation of the aorta could be minor all the way to the need for immediate open-heart surgery. But they wouldn’t know for sure until Will was born. “The hardest thing was knowing, but not knowing,” Fisher said. “It was the most scared I’ve ever been.” They met with cardiologists at Children’s Healthcare of Atlanta’s Heart Center and selected a surgeon, Paul Chai, MD, before Will’s birth. Everything was in place when he was born, and he had surgery to correct his CHD at four days old. With Mary Helen still recovering from a C-section and Covid-19 protocols, Fisher stayed alone with Will for the days leading up to surgery. “Everyone at the Heart Center was accommodating and reassuring, and they were willing to answer all my questions,” Fisher said. “With Mary Helen still recuperating at the hospital and another young child at home, I felt so guilty for any time I had to leave Will’s side, but the nurses made me feel comfortable leaving him in their care. They cared about our well-being as much as Will’s…
Sonographers Provide Insight to the Heart
A Sibley sonographer takes specialized pictures of a child’s heart – known as a cardiac ultrasound or echocardiogram – which are made using sound waves. The echocardiogram provides clear images of the structures of the heart that can reveal the cause of extra heart sounds or problems with connections and blood flow. “With children, we cannot assume that the child’s heart structure is normal. We take multiple images to assess the anatomy and function of the heart,” said Laurie Clark, Manager of Clinical Operations – Sonography, at Sibley Heart Center Cardiology. “We’re assessing patients with chest pain or fainting episodes and for murmurs that doctors have heard.” Sibley sonographers also follow kids with congenital heart disease (CHD). They perform echocardiograms to monitor patients who have had a surgical repair on their hearts or to determine if they will need intervention in the future. The frequency of visits depends on the complexity of the defect. The main thing for parents to know about an echocardiogram is that it doesn’t hurt. However, because most kids have experienced being immunized at other physicians’ offices, they can be anxious when getting this test. The sonographer sometimes needs a parent’s help to calm and quiet…
Treatments for d-TGA Provide Excellent Outcomes for a Life-Threatening CHD
Transposition of the great vessels (d-TGA) is a congenital heart defect where the aorta and pulmonary artery are switched or “transposed” resulting in inadequate delivery of oxygen to the vital organs and is one of the congenital heart diseases that results in a so called “blue baby.” In the normal circulation, the deoxygenated (oxygen-deficient blood) returns to the right side of the heart that pumps blood to the lungs via the pulmonary artery. The oxygenated blood from the lungs is returned to the left side of the heart that pumps the oxygenated blood to the rest of the body. When the aorta and pulmonary artery are switched (transposed), the deoxygenated blood from the body enters the right side of the heart and instead of going to the lungs via the pulmonary artery, goes directly to the back to the rest of the body via the aorta resulting in an extreme lack of oxygen delivery to the vital organs. At the same time, the oxygen rich blood from the lungs that enters the left side of the heart is pumped directly back to the lungs. D-TGA can often be diagnosed during pregnancy through a fetal echocardiogram. It’s important to determine the…
2020 Was About Being Brave for This CHD Family
When Betsy was 20 weeks pregnant with her daughter, she and husband Ryan went in for a routine ultrasound, expecting nothing out of the ordinary. But when the room became quiet, they knew something didn’t feel right. They were told their child had Transitional Atrioventricular Canal Defect, which meant her heart was not forming correctly. Within 24 hours, they were meeting with some of the best fetal and pediatric cardiologists in the world at Sibley Heart Center Cardiology. “We’ll never forget the shock and fear that we felt hearing that news,” Ryan said. “Thankfully, Children's is in our backyard, and everybody, in every moment from then until today, has provided us with the highest level of comfort. There was a blessing in finding out before she arrived so we could have a plan in place.” Betsy and Ryan anticipated Samantha’s heart repair would occur at the beginning of 2020, but then COVID-19 hit. Thankfully, she continued to do well, and they were able to schedule her surgery for June 1. The silver lining, Ryan says, was that she hadn’t been to daycare since March, and she was in perfect health for the big day. The surgery was successful. It was…
Physicians with Heart: Michelle Wallace, MD
Sibley pediatric cardiologist Michelle Wallace, MD, said she loves the anatomy and constantly furthering her knowledge of how to best care for patients with CHD. But what really keeps her going each day are the patient and family relationships she has gained as a doctor at Sibley for the past 10 years. "I’m so fortunate to have long-term patients whose families have entrusted me with their care since they were in the womb,” Dr. Wallace said. “You sometimes don’t realize how you’ve impacted someone until later, especially as they go through really tough experiences.” Being part of a team that provides the highest level of both primary and specialty care all in one place, gives Dr. Wallace an enduring sense of satisfaction. CHOA is dedicated to improving the quality of life of patients not just in Atlanta, but across the state, and she said her colleagues are outstanding in several ways. They’re not just smart people, brilliant people, but they are dedicated and kind people,” Dr. Wallace said. “They, of course, know how to deal with a range of complex diseases, but they are also focused on making a family’s experience as good as it can be, from their first…
Physicians with Heart: Dr. Brandon Harden
Brandon Harden, MD, says becoming a physician is the only career he can remember wanting to pursue in his life. His mom, a teacher, and dad, a pharmacist, encouraged him to become a doctor. His hometown of Rincon, outside of Savannah, had no pediatrician, and when he started his pre-med program at the University of Georgia, Dr. Harden envisioned filling that role someday and set it as his goal. In his third year of medical school, Dr. Harden was exposed to pediatric cardiology and fell in love with the specialty. As he was finishing his training in Washington, DC, he accepted the job where he’s been for seven years now at Sibley Heart Center Cardiology in the Athens clinic. His position gives him the satisfaction of working for a program with an excellent local and national reputation while maintaining the small-town feel he aspired to. I chose pediatrics because I’m drawn to kids, and I’ve always enjoyed interacting with them from the time they’re babies all the way to becoming college students,” Dr. Harden said. “I like establishing that bond with a family and watching their child grow and thrive at every stage of life. It brings me joy, makes…
Genetics Team Looks for Clues to Ensure the Best Care for CHD
Because it is possible to identify an underlying genetic cause in up to a quarter of children with CHD, the Genetics team at Sibley Heart Center Cardiology is dedicated to identifying and monitoring these conditions in children and providing educational support and guidance for families. Stephanie Burns Wechsler, MD, is a Sibley pediatric cardiologist who is also board certified and trained in medical genetics. She splits her time between the Cardiac Acute Care Unit at Egleston, Sibley outpatient clinics and Emory University Hospital. She is an attending physician at the Aorta and Vascular program at Sibley. Genetic connective tissue conditions like Marfan Syndrome, and chromosomal diseases, like Turner syndrome, which can be associated with an enlargement of the aorta, are addressed in that clinic. But even structural congenital heart disease can have a genetic component. “We are involved at the beginning of a family’s journey of learning their child has a particular genetic syndrome,” Dr. Wechsler said. “We’re here to help families understand the condition and sometimes to arrange testing and genetic counseling for other members of the family.” Questions that parents typically ask include, “Where did this come from? What about my other children? What do we need to…
Brothers with CHD Live Life to the Fullest
With no history of CHD in either her or her husband’s families, Katie struggled with feeling that her firstborn son Miguel’s heart defects were somehow her fault. He was born six years ago with L-transposition of the great arteries, a serious and rare congenital heart defect in which the two pumping chambers are switched and in addition, the main arteries leaving the heart are reversed. At the time, it sounded like a death sentence to Katie. However, Miguel did very well, living a normal life and having a successful double switch operation in 2018. Brian Cardis, MD, at Sibley Heart Center Cardiology in Macon is his pediatric cardiologist. Miguel now attends kindergarten and runs everywhere, according to his mom. When Katie became pregnant a second time with another son, Dominic, she and Jon figured lightning couldn’t strike twice. Miguel’s heart condition is very rare, and it would be almost unheard of to have two children with complex heart disease. But, when Katie went in for a routine ultrasound, doctors noticed an abnormality in Dominic’s heart as well. A fetal echocardiogram was then performed by Dr. Cardis and showed that Dominic had a rare heart defect consisting of dextrocardia (heart on…
A Simple Word of Thanks Means the Most
In the early days of the pandemic, the staff at Sibley Heart Center Cardiology’s - Center for Advanced Pediatrics clinic felt the daily stress of figuring out how to work and see patients safely. They kept abreast of CDC protocols and guidelines, made numerous adjustments to their workflow, ensured everyone had proper PPE, all while maintaining constant communication with their colleagues to provide reassurance and leadership. “We did a lot of team huddles to ensure that we were maintaining the staff’s morale and helping them to feel comfortable and safe at work,” said Latasha Ivey, Clinical Supervisor, Nursing, at the Center for Advanced Pediatrics. “We focused on constantly communicating the expectations and any changes that needed to be made. Our team was so understanding and accommodating. They really rose to the occasion." The patients and families at the Center for Advanced Pediatrics were vital to keeping the staff positive, Latasha said. When the families saw them taking every necessary precaution, they breathed a sigh of relief and often expressed their gratitude through cards and letters. "The families always had a smile for us and would tell us that they understood we were going through a transition,” Latasha said. “It’s amazing…
Physicians with Heart: Dr. Glen Iannucci
Sometimes all roads lead back to the heart -- at least that’s how it has worked for Sibley pediatric cardiologist Glen Iannucci, MD. He was inspired to go into medicine after being treated at Scottish Rite as a 15-year-old involved in a car accident. He chose pediatrics because he enjoys the opportunity to head off disease processes before they gain momentum in adulthood, and his undergraduate training in civil engineering and fluid dynamics at Georgia Tech influences his work today as a physician in Sibley Heart Center’s Aorta and Vascular Disease Clinic. It all comes together in Dr. Iannucci. “I was drawn to pediatric cardiology based on an experience in medical school during an adult cardiology rotation,” Dr. Iannucci said. “I was trying to understand how and why a patient’s blood had been rerouted in significant ways, and I spoke with the pediatric cardiologist who explained the reasons for all the surgeries. I found it fascinating.” Dr. Iannucci developed an interest in the Aorta and Vascular Program when he worked with Denver Sallee, MD, as a fellow and in his early years of training. The program follows children and young adults with blood vessel diseases, which can involve blood vessels…
He Was Born to Do This
When Sibley Heart Center Cardiology contact center manager Kim Cordum saw a story in 2011 about Casper, Children's Healthcare of Atlanta’s first full-time hospital therapy dog, and his incredible impact on a young patient, she thought he sounded a lot like her young Golden Retriever, Cooper. Always sweet and loving and never hyper, Cooper was already well trained at 18 months old. Kim decided to investigate having her dog certified as a therapy dog. She took Cooper to Happy Tails Pet Therapy, where he was tested on skills like remaining calm when approached by strangers or strange dogs or hearing loud noises. The final test was to sit and stay in a big, empty warehouse while Kim left his sight for several minutes. He passed with flying colors and became one of the youngest dogs to complete the program. Kim began signing him up for “jobs.” One of our first assignments was at Peachford Hospital, where we visited once a week and hung out with the kids and a team of dogs from Happy Tails,” Kim said. “The first time we went, it was so rewarding, and I thought maybe this dog was born to do this. He let the…
Physicians with Heart: Dr. Shannon Jones
Because of her special connection with kids, Shannon Jones, MD, always knew she wanted to practice pediatric medicine. Her love of pediatric cardiology, however, developed during her residency training. “After seeing all the different sub-specialties as part of my residency training, I fell in love with pediatric cardiology,” Dr. Jones said. “I love the physiology of it and the wide variety of patients we get to treat.” Returning to the warm weather and family in the South made Emory a perfect fit after residency for her fellowship training. She then had the opportunity to stay on with Sibley Heart Center Cardiology as an attending physician after completing her fellowship. Dr. Jones wears a number of different hats at Sibley, and she sees patients in several different settings including the Hamilton Mill clinic, the in-patient setting in the Children's Heart Center, Cardiac Acute Care Unit (CACU), and as part of a city call team that provides consults to metro Atlanta hospitals. Dr. Jones says she enjoys helping to treat a variety of heart conditions in children and adolescents. Since she’s now been with Sibley for two years, it’s particularly meaningful to have had the benefit of seeing patients beginning with their…
Ethan’s CHD Inspires Him to Study Biomedical Engineering
Ethan was born nearly 18 years ago with Tricuspid Atresia, a congenital heart defect in which a valve between two of the heart's chambers isn't formed. Instead, there's solid tissue between the chambers, which restricts blood flow and causes the right ventricle to be underdeveloped. Because he knows that a heart transplant could be in his future, Ethan, a high school senior, hopes to study the use of stem cells to grow transplantable organs when he goes to college next year. Knowing that someone has to die in order for him to receive a heart transplant bothers him,” said Ethan’s mom, Jeane. “He always thinks of others first, and he wants to study growing transplantable organs to alleviate that scenario if possible.” After the last of his corrective surgeries at age 2, Ethan’s parents elected to move to Georgia from Mississippi to have access to better healthcare for him. They now see Brandon Harden, MD, at the Sibley Heart Center Cardiology clinic in Athens. Dr. Harden and Ethan bonded over being Eagle Scouts, a rank that Ethan achieved earlier this year. His other accomplishments are similarly impressive. Ethan played trombone in concert band for six years and vibraphone in marching…
Playing Well: Humorologists Bring Joy and Laughter to Sibley Patients
Being in the hospital isn’t easy for kids. In addition to not feeling well physically, they can often feel emotionally stressed and powerless. The clowns from Humorology Atlanta aim to add levity to the room with their artistry and love of fun. “When we visit a patient, they lead us,” said Maia Knispel (Dr. Meme), program director. “They get to be in charge and the focus of all the attention. They don’t get to say ‘no’ to a lot people, especially when they’re in the hospital, but when we visit, they’re in charge and they get to boss us around.” Humorology Atlanta was born from the Big Apple Circus, which began bringing clowns into medical institutions in the 1990s. When Big Apple closed down in 2016, Knispel partnered with other Atlanta artists to launch the nonprofit that now serves area pediatric hospitals, senior communities and workplaces. The HA! “Clown Doctors” use music, dance, circus arts, mime, magic, improvisation and the art of clowning to spread laughter and provide focus, distraction, fun, motivation, celebration, relaxation and relief. The clowns always work in pairs and take time to connect with the staff ahead of visiting patients on the floor to discover if…
Coming Full Circle: Sibley Feels Like Home for a Globetrotting Family
When Megan and her husband Andy were contemplating where to have their first son, Atlanta seemed a natural choice although they were living in San Antonio, Texas, at the time. That’s because Andy worked for the San Antonio Spurs basketball team, and Ace’s birthday would fall in the summer, his busiest time at work. With Megan’s parents in nearby Forsyth and available to help, the couple’s decision was easy. Megan had already found an Atlanta OB-GYN when her baby was diagnosed prenatally with d- transposition of the great arteries with intact ventricular septum (d-TGA), a type of CHD where the two arteries that carry blood from the heart to the lungs and body are reversed or transposed. She was referred to Sibley Heart Center Cardiology and met with William Border, MD. The Sibley team was the first heart team we ever met with, and I have to say they have an incredible bedside manner,” Megan said. “They got us in with Dr. Border very quickly after we found out about Ace’s d-TGA, and they made us feel comfortable and welcome. The whole team was great.” Although ultimately Ace was born in Philadelphia where he received a life-saving cardiac catheterization, Megan…
Born at Just 23 Weeks, These Twins Have Grown from Tiny to Mighty
When D.J. and CharliAngel came into the world 23 weeks into Courtney’s pregnancy, she had little idea of what lay ahead. She likens being the parent of micro-preemies to experiencing a constant state of “fight or flight” or perhaps being on a roller coaster blindfolded. “Your lows are really low, but your highs are really high,” Courtney said. “It may give you flutters to go down into the dips, but we just keep seeking the thrill of the high points and that gets us through.” While Charli was able to come home from the hospital at 6 months old, D.J. spent 458 days there. He had a patent ductus arteriosus (PDA), a persistent opening between the two major blood vessels leading from the heart that happens most often in premature infants, that required surgery to close. He also has Pulmonary vein stenosis (PVS), a rare cardiovascular condition in which oxygenated blood from the lungs cannot easily return to the left side of the heart to be pumped out into the body. He is trach/vent dependent. D.J. receives treatment at the Children’s PVS Program, and Christopher Petit, MD is his pediatric cardiologist. The whole PVS Program team has become fond of D.J., who…
What Sounds Does a Cardiologist Hear Through a Stethoscope?
While a percentage of patients who see a pediatric cardiologist at Sibley Heart Center Cardiology are coming because of complex issues, our doctors and nurses also care for many patients who are coming because of chest pain, heart palpitations or other issues but are never admitted to the hospital. Something they all have in common is that they will be evaluated with a stethoscope. What are doctors listening for when they place a stethoscope on a patient’s chest? A stethoscope is not terribly different from a blood pressure cuff, an echo machine or a pulse oximeter,” said Robert Campbell, MD, Sibley pediatric cardiologist. “It’s simply another tool we use to gather information about the patient.” A stethoscope allows a physician to auscultate, or listen to, five types of sounds or noises generated by the heart and blood flowing through it: Heart sounds. These are simply the sound of the valves of the heart closing. A normal heart has four valves – two sets of two – that are flexible and strong, similar to plastic wrap. The valves open silently, but close with a sound like a door shutting. Sounds that differ from regular heart sounds could indicate an abnormality in…
Rare In-Utero Surgery Gave Nathan a Chance at Life
When Katie was 20 weeks pregnant with her second son, she went in for what she expected to be a routine anatomy ultrasound. However, when the maternal/fetal specialist saw an enlarged aorta, Katie was referred to Sibley Heart Center Cardiology. She and husband James learned that their baby had a Unicuspid Aortic Valve, moderate stenosis, and evolving Hypoplastic Left Heart Syndrome (HLHS). Nathan’s blood flow was restricted, and his little heart was pumping extra hard because of it, leading to severe damage to his left ventricle. Sibley pediatric cardiologist Christopher Petit, MD, explained to Katie and James what an aortic valvuloplasty involved. I can’t describe the emotions I felt at that appointment, because it was overwhelming,” Katie said. “I just wanted him to be okay. We were totally unaware of CHDs and how common they are, so it helped to have the caring doctors and staff at Sibley available to answer our questions and explain things to us every step of the way. We knew Nathan was in the best hands possible.” Sibley continued to regularly monitor Nathan’s heart, and his parents held their breath as they watched his stenosis progress from mild/moderate to severe. As the severity increased, they…
Never Alone: Mended Little Hearts Connects Parents with Other CHD Families
Mended Hearts was born in 1951 when a Boston heart surgeon suggested to some of his patients that there would be much to gain from sharing their experiences with each other. It grew from four members to more than 40,000 and is now the largest peer-to-peer heart patient support network in the world. In 2004, one of the Mended Hearts leaders had a grandchild with CHD, and Mended Little Hearts was launched to address the needs of parents with heart warrior kids. Mended Little Hearts now has 60 chapters in the U.S. Jodi Smith, program director of Mended Little Hearts, knows what it’s like to want to connect with other CHD families. One of her first thoughts when her son was diagnosed with a heart defect when she was 20 weeks pregnant was, “Who can I talk to who’s been through this?” You’re not prepared,” Smith said. “I read What to Expect When You’re Expecting cover to cover, but CHD was not on my radar. So many people have never heard of it. I had never heard of it, and I knew that I couldn’t have someone feel the way I did when we first learned about my son’s condition.”…
The Amazing Heart and How it Works
When a child is diagnosed with CHD, their Sibley pediatric cardiologist is often called on to explain how the heart works so parents can better understand their child’s condition. Most of us never think twice about the function of this important organ, taking for granted how it works – day in and day out – to keep us alive and healthy. But when something goes wrong, it becomes essential information, and Sibley doctors are excellent teachers. The single purpose of this fist-sized muscle is to pump oxygen and nutrient-rich blood throughout our bodies, beating 100,000 times per day and pumping about 2,000 gallons per day. It is a vital part of a person’s cardiovascular system, which includes all the blood vessels that carry blood from the heart to the body’s tissues and back again. The heart has four chambers separated by a wall of tissue called the septum and aided by four heart valves (tricuspid, pulmonic, mitral and aortic) that open and close with flaps, allowing blood to flow in only one direction. The two upper chambers of the heart are the atria, which receive incoming blood from the body. The right atrium receives deoxygenated blue blood from the body,…
Heart Mom Creates Dream Wedding Giveaway to Thank Essential Workers
Courtney was sailing through her pregnancy with her second son and looking forward to her C-section date when she began to have very mild contractions three weeks early. Thinking nothing of it, she and her husband Steven went to the doctor but almost didn’t pack a bag or bring a car seat, so sure they were that she’d make it to her due date. Two hours later, Brock was born by C-section and rushed to the neonatal intensive care unit with trouble breathing. “My first son Henry was so easy and healthy, it never crossed our minds that we could have a child with a health problem,” Courtney said. “After Brock was born, 10 hours passed before I could see him. I thought that was the worst day of my life, but I didn’t know what was coming next.” Brock’s lung problems resolved after three days, and just before they were scheduled to go home, a nurse thought she heard a faint heart murmur that no one else had. Because a pediatric cardiologist was already coming to see the baby sharing Courtney’s hospital room, the nurse decided to ask him to look at Brock as well, just as a precaution.…
Pulmonary Vein Stenosis (PVS) Requires Ongoing Intervention and Maintenance
Pulmonary vein stenosis (PVS) is cardiovascular condition in which oxygenated blood from the lungs cannot easily return to the left side of the heart to be pumped out into the body. The right side of the heart begins to struggle to pump blood into the lungs and the lungs become congested, which can lead children with PVS to experience heart failure. PVS, which is a progressive disease, is life-threatening if left untreated. PVS affects mostly infants born prematurely. It may develop in the neonatal ICU shortly after birth or may be detected when babies are laboring to breathe or failing to gain weight. “This is a rare disease that we are just beginning to understand better,” said Christopher Petit, MD, pediatric cardiologist and leader of the Children’s PVS Program team. “Who will get it and why are still poorly understood.” PVS is a disease of inflammation that begins in the immature air spaces of a premature baby’s lungs, causing a narrowing of the pulmonary veins. The inflammation process can also be kicked off post-surgically after a patient is placed on a breathing machine. When infants develop PVS, it is often seen in only one of four to five veins of…
Heart Dad Takes His Baby Daughter’s CHD in Stride
When Jason’s wife, Kayla, was 22 weeks pregnant in 2018, a routine ultrasound revealed something they never expected. McKinley, their fifth child and the only girl in the family, would be born with severe congenital heart disease. McKinley’s heart disease consisted of a double inlet left ventricle (DILV), a congenital heart defect in which a child has only one working ventricle, or pumping chamber, instead of two. McKinley also had pulmonary stenosis, Atrial Septal Defect (ASD) and Transposition of the Great Arteries (TGA). McKinley was in the hospital for several weeks, on oxygen and a feeding tube, as everyone worked hard to get her big and strong enough for open heart surgery. She had the surgery at 6 months old and will have another, but doctors don’t know when. McKinley’s pediatric cardiologist is Sibley’s Wesley Lindsey, MD, in Gainesville, and Jason said he values the expertise and accessibility of Dr. Lindsey and his staff. Dr. Lindsey is the smartest man I know,” Jason said. “There are so many different things going on with her heart, and the heart itself is very complicated. The people at Sibley are there when you need them, and they really make you feel better about what…
HLHS Treated with Three Surgeries to Redesign the Heart
Hypoplastic left heart syndrome (HLHS) is a birth defect that affects normal blood flow through the heart. As the baby develops during pregnancy, the left side of the heart does not develop and grow appropriately. Hypoplastic left heart syndrome is one type of congenital heart defect. Congenital means present at birth. Because a baby with this defect needs surgery or other procedures soon after birth, HLHS is considered a critical congenital heart defect (CCHD). In hypoplastic left heart syndrome, the poor growth of the left-sided heart structures results in the following: The left ventricle is underdeveloped and too small. The mitral valve is not formed or is very small. The aortic valve is not formed or is very small. The initial part of the aorta is underdeveloped or is too small. Often, babies with hypoplastic left heart syndrome also have an atrial septal defect, which is a hole between the left and right upper chambers (atria) of the heart. In a baby without a congenital heart defect, the right side of the heart pumps oxygen-poor blood from the heart to the lungs. The left side of the heart pumps oxygen-rich blood to the rest of the body. When a baby…
What Inspires Nathan to Inspire Others
A rare heart condition, hidden until Nathan was 6, was a surprising turn in his family’s journey that they never expected to take. After an amazing surgery to rescue his left pulmonary artery, Nathan has been inspired to “never give up,” just as his heart doctors refused to give up on him. Unlike other kids who are diagnosed with CHD before birth or as newborns, Nathan was diagnosed with an absent left pulmonary artery after his mom took him in for a routine sick visit for the flu in 2017. His pediatrician heard a heart murmur and sent them to Sibley Heart Center Cardiology for further testing, which revealed his condition. Although the family was told by some that there was little to be done, Sibley pediatric cardiologist Holly Bauser-Heaton wanted to try. We didn’t realize at the time how rare this procedure was and that it had never been done in a patient over the age of 2,” mom Jennifer said. “Dr. Heaton told me not to Google it, and I didn’t, so I didn’t understand how big it was. We just knew that she said she had hope that she could do it, and we thought, ‘Of course…
Life for CHD Patients Always Vigilant, Even Before COVID-19
You would never know it to look at Halle, but she is a tough heart warrior who has survived congestive heart failure and open heart surgery. Before her birth, Halle was diagnosed with Atrioventricular Canal Defect, and she got her “zipper scar” at six weeks old. At the same time, her parents learned she had a chromosome abnormality and Gilbert’s Syndrome. Doctors told Maranda and Alan that they didn’t know how -- or if -- the chromosomal condition would affect Halle, so they watch and wait. So far, she has thrived and started kindergarten this year. “She’s excelled at school, and we’re so proud of her,” Maranda said. “We wonder sometimes, is this when something’s going to happen? It’s hard as parents, not knowing whether she’ll be okay, but at the same time, trusting that she will.” Halle has continued leakage in her mitral and tricuspid valves, which is closely monitored by her pediatric cardiologist, Neill Videlefsky, MD. She may require another surgery in the future, but for now, she is doing remarkably well. She participates in gymnastics and swim team, which her pediatrician recommended for building her heart muscle and stamina. Like the rest of the world, Halle and…
Meeting the Special Needs of Each Special Kid is What Sibley Does Best
When Hardy had his first surgery as a toddler to remove a subaortic membrane, nobody could have predicted how difficult the following years would be for him and his family. By the time he needed a third surgery at the age of 5, they’d learned that Hardy is autistic and nonverbal, which introduced a whole new set of challenges in managing his CHD. “The third surgery was a completely different experience from the others,” mom Rachel said. “The sensory issues with autism make him very irritated and being stuck in a hospital bed with wires and needles was way more intense for him than average kid. Because he’s nonverbal, we aren’t able to explain what’s happening, which causes fear and makes it harder to manage him. His recovery time was extended because of how unhappy he was.” Rachel and Daniel learned a lot about Hardy between that surgery and the last one, which was one year ago. They were able to better communicate his needs with the behavioral therapy team at CHOA and together they kept him mentally occupied so that his recovery was faster. Rachel was pleased to learn that this team was in place to support them during…
Sibley Doctors Use Telemedicine to Stay Connected to Patients During COVID-19
As we address a new “normal” in the midst of COVID-19, medical professionals all over the country are continuing to implement creative measures to stay in touch with patients and provide the high quality, excellent care they are accustomed to. Denver Sallee, III, MD, Pediatric Cardiologist and Chief Financial Officer at Sibley Heart Center Cardiology, describes telemedicine as a new generation component of the broader category of “telehealth.” Telemedicine employs audio plus video to establish a two-way appointment with a healthcare provider to get clinical care. Dr. Sallee envisions using lessons learned from telehealth during COVID-19 to provide highly specialized cardiac care following the pandemic to children throughout Georgia through the Aorta and Vascular Program, the Syncope Clinic and the Arrhythmia Clinic. Telemedicine would allow patients to have cardiac testing done in local clinics, and then complete their visits with a Sibley pediatric cardiologist via a virtual telemedicine visit, reducing the need to travel long distances for follow-up appointments. With the pandemic, a lot of sub-specialty and primary care visits are now being conducted virtually,” Dr. Sallee said. “As people become more comfortable with this method of patient care, it will help the technology take off, and I think it…
Dedicated Sibley Cardiomyopathy Program Treats and Manages Complex Heart Muscle Disease
Cardiomyopathy is a broad term that refers to a disease of the heart muscle that impairs its ability to pump blood effectively. Some cases are acquired, such as those resulting from a viral infection or certain medications, and others can be genetic. Cardiomyopathy can be seen in isolation or as a part of Congenital Heart Disease (CHD). The Children’s Cardiomyopathy Foundation reports that one child out of 100,000 is diagnosed with cardiomyopathy, and that for every diagnosed child, there is likely another undiagnosed child at risk of premature death. Up to 67 percent of cases have no known cause. Different kinds of cardiomyopathy cause the heart muscle to enlarge, thicken or become stiff, and the disease can lead to irregular heart rhythms or heart failure. Robert Campbell, MD, pediatric cardiologist at Sibley Heart Center Cardiology, said there are five classifications of cardiomyopathy that doctors may encounter in patients sent to the Hypertrophic Cardiomyopathy Program at Sibley Heart Center Cardiology. Dilated cardiomyopathy This is the most common form of cardiomyopathy in which the heart muscle becomes enlarged and stretched, causing the heart to become weak and pump inefficiently. Problems that can occur include irregular heart rhythms, risk of blood clots, heart failure and leaky mitral valve.…
Atlanta’s Ronald McDonald House Provides Respite and Community for Heart Warrior Families
Being in the hospital with a child with Congenital Heart Defects (CHD) is stressful enough, but what if you live an hour (or several states) away? How do you navigate finding the basic necessities of a place to stay, meals and transportation to and from the hospital, all while being far from your family and support system? For many families of CHD kids who live a distance from Atlanta, this is a reality they must face. Atlanta Ronald McDonald House Charities exist to make it a little easier. The Atlanta chapter of Ronald McDonald House Charities was started in 1979 with an eight-room home near Egleston. They now offer 81 guest rooms for families seeking medical care in Atlanta for their children, from newborn to age 21. And the cost to families? Free. We are an integral part of family-centered care,” said Beth Howell, President and CEO of Atlanta Ronald McDonald House Charities. “Every family wants their child to be supported and not alone while they’re in the hospital. We know that if you reduce the stress on a family, you reduce the stress on the child, which gives them their best chance to heal. It’s very important to provide…
Learn Ways to Protect Your CHD Child – COVID 19 FAQ
Thank you for interest in learning about what you can do to protect children with CHD during this time. We share your concerns, and we are committed to ensuring the health of our patients. What is known and not known about how this virus affects children with congenital heart disease? Fortunately, children are typically not as severely as affected as adults when infected with COVID-19. Thus far, children have represented a tiny fraction of the confirmed cases in Georgia, with no known deaths among children. However, among adults, especially older adults, we do know that those with cardiovascular disease have a more severe case of COVID-19 when they are infected. Unfortunately, there is very limited data specifically related to children or adults with congenital heart disease. As such, the CDC at the current time is considering CHD as a condition that may increase the risk of severe infection. What can I do at home? The best way to stay healthy is to prevent infection as much as possible. Washing hands, practicing social distancing, minimizing touching your face, and staying at home as much as possible are all good practices at the current time, especially for families with a child with…
Physicians with Heart: Dr. Robert Whitehill
When Robert Whitehill, MD, was in medical school, he intended to go into his third-year rotations, where physicians typically choose their specialties, with a totally open mind. However, his first rotation was in pediatric cardiac service, and on his very first day, he watched a doctor close an ASD. It was a routine for procedure for him, but it made a massive difference in the life of a little girl who was not able to keep up with her friends before that surgery,” Dr. Whitehill said. “I fell in love with the specialty right out of the gate, and that rotation became the standard against what I judged everything else. So much for staying open minded!” Dr. Whitehill is now an electrophysiologist in the Children’s Healthcare of Atlanta’s Arrhythmia Program. Electrophysiology is a highly specialized field of study within cardiology that deals with pediatric heart rhythm disorders and the electric system of the heart. He focuses on inherited heart disease and device implantation. “During my fellowship, I had a couple of patients who were previously healthy and experienced cardiac arrest due to certain arrhythmias,” Dr. Whitehill said. “We were able to fix the problems, and they went on to live…
“We’re Lucky to Have Her”: Izzy’s Story
Although it can be tough to hear something’s wrong with your baby’s heart when you’re pregnant, Brandi says she’s glad she knew ahead of time that her daughter would need special care when she arrived three years ago. Brandi and her husband found out that Izzy had several heart defects at Brandi’s 20-week ultrasound. They were referred right away to Sibley Heart Center Cardiology, where Dr. Harden began preparing them for what was to come. They arranged for Brandi to give birth to Izzy at Northside Hospital in Atlanta, where she would be close to the specialized care she needed. Izzy was diagnosed with coarctation of the aorta (COA), double outlet right ventricle (DORV), atrial septal defect (ASD), ventricular septal defect (VSD), Pulmonary Stenosis, Mitral Valve Stenosis and Hypoplastic Aortic Arch. She had her first surgery to correct her heart defects at 5 days old. Sibley was pretty great with us,” Brandi said. “Before Izzy was born, we met with the surgeon and the nurse practitioner. They spent the good part of a day just on our case, going through everything and giving us the tools to mentally prepare, although nothing can really prepare you.” On the day of Izzy’s…
CHD Won’t Get in the Way of a Family’s Dreams for Their Daughter
When Ivy and Joseph first learned something was wrong with their baby’s heart, they were worried about what it could mean for her future. As a sports-loving family, they’d dreamed about their baby girl growing up to be healthy and active. When Bennett was born, it was confirmed that she had a Ventricular Septal Defect (VSD) as well as a small atrial septal defect (ASD). Ben Toole, MD, is Bennett’s pediatric cardiologist, and he reassured her family that her heart defects can be repaired, and she can go on to lead a healthy, active life. We were emotional about it at first, really shocked and devastated,” Ivy said. “We were happy that it was something that could be fixed, but we worried that she’d be limited on what she could do. Dr. Toole and his staff have been exceptional, answering all our questions and really listening to what we have to say. This should not prevent her from growing and participating in activities, which is great news.” For other CHD families who are just learning of their child’s heart diagnosis, Ivy recommends joining the Kids at Heart Facebook page, where other CHD parents gather to ask questions and provide support for…
Returning to Practice in His Hometown Gives this Pediatric Cardiologist all the Feels
When Andrew Dodgen was growing up in Columbus, he never thought of the area as “underserved.” But since returning to his hometown with his wife and two young children to work with Sibley Heart Center Cardiology, he has realized that, at least in terms of pediatric specialty services, the area is in desperate need. He is currently the only pediatric cardiologist in Columbus. Dr. Dodgen was born in Macon and raised in Columbus since the age of 3. He met his wife at LaGrange College, and they went to medical school together at Mercer University, both choosing to become pediatricians. “We always had the goal to get back home to Georgia, not only to be close to family, but to live out the Mercer mission of providing primary care and specialty services for underserved populations in the state,” Dr. Dodgen said. “Though we have had the opportunity work at amazing hospitals with incredible people, we always hoped to take advantage of any openings at Sibley. In July, we got one, and it’s everything we hoped for and more.” Dr. Dodgen spends the bulk of his time in outpatient pediatric cardiology clinic with an emphasis on congenital heart disease and general…
Echocardiograms Help Doctors Provide the Best Care to Young CHD Patients
There are four types of echocardiograms that can be used as diagnostic or pre- and post-surgery quality control tools for children with Congenital Heart Disease (CHD). All are painless to the patient and provide detailed looks at the heart and its functioning. The most common type of echocardiogram is a transthoracic echo (TTE). In a TTE, sound waves are sent through a handheld device placed on a child’s chest to show the structure and function of the heart on a monitor. A TTE requires that patients lie quietly on their sides for up to 40 minutes, depending on the complexity of the diagnosis. There is no pain involved, but small children may be afraid or unable to lie still for that long. While distraction techniques usually work well, children may need light sedation to allow the sonographer to capture the best pictures. “Patients are sent to us for a TTE before heart surgery to review all segments of the heart and its vessels,” said William Border, MD, Director of Noninvasive Cardiac Imaging at Children’s Heart Center. “Often there’s more than one issue going on in the heart, and we must capture every little detail to help surgeons determine what type…
Connecting with Other Families Reminds CHD Mom She’s Not Alone
Like many moms whose kids have Congenital Heart Defects, Leslie was not expecting anything outside the norm when she gave birth to her firstborn daughter in 2015. But when Sarah Jane made her entrance six weeks early with several birth defects, including three CHDs, Leslie’s world was turned upside down. At 3 weeks old, Sarah Jane had open heart surgery to correct VSD, ASD, Coarctation of the aorta and bicuspid aortic valve. She spent most of the next three months in the hospital at Children’s Health Care of Atlanta at Egleston. Leslie and her husband, who are from Columbus, spent their days and nights by their daughter’s side or at the Atlanta Ronald McDonald House. It was a very difficult time,” Leslie said. “I was a brand-new mommy to this baby girl, and I was really just going through the motions, trying to figure everything out. I didn’t know it at the time, but I was struggling myself. The nurses and doctors at Sibley were so good to us, keeping us informed and being patient and sweet with us.” One nurse in particular stands out to Leslie because of the extra time she took to keep the family informed through…
When Your Scars are Beautiful
After facing nine open heart surgeries and one brain surgery, Graci, at age 15, is the strongest person her mom Chrystie knows. Graci, who is a twin, was diagnosed with Aortic Stenosis at 2 days old and faced her first open heart surgery to remove an aneurysm on her heart at just 6 weeks old. She has gone into congestive heart failure, suffered from Endocarditis, , Mitral Valve Regurgitation, Pulmonary Hypertension, a brain bleed, seizures, abnormal heart rhythms, and she has three artificial valves in her heart. She’s been on ECMO three times. Through it all, she never gives up and fights bravely with her mom by her side. Chrystie has been with Graci for almost all of her multiple hospital stays. “Before I had the girls, I didn’t know how common heart defects are, with one in 100 babies born with CHD,” Chrystie said. “You don’t realize that there are more kids born with CHD than have pediatric cancer! It’s hard enough being a parent but having a child with complex medical issues makes it even more challenging. But it also makes your bond stronger. I tell her that even if I had known ahead of time what was…
Unexpected Diagnosis Leads to 96-Day Wait for a New Heart
When Kaleb was born, he passed his newborn screening with flying colors. His mom, Marissa, had a normal pregnancy and delivery, but when Kaleb was just three months old, he became fussy, sleepless and stopped eating during a weekend family getaway to Savannah. Marissa says she knew something was just not right with her baby, and after returning home early, she took him to urgent care. After an abnormal EKG, Kaleb was immediately life-flighted to Children’s Healthcare of Atlanta at Egleston. “We were very surprised,” Marissa said. “We had to drive to meet the life-flight at the hospital, and even on the way, I just kept thinking it had to be a mistake and the EKG would be okay when we got there. We had no idea we would get that kind of news.” The news that Kaleb had dilated cardiomyopathy with left ventricular non-compaction came as a shock to Marissa and husband Kale, and it was closely followed by the news that he would need a heart transplant. They waited 96 days in the hospital for a new heart. Chad Mao, MD, Medical Director of the Advanced Cardiac Therapies program, has been with the family since the beginning of…
CHD Mom Uses Her Experience to Advocate for, Educate Other Families Like Hers
Fifteen years ago, Amy Basken was just like any other new mom who knew little, if anything, about Congenital Heart Disease (CHD), the most common birth defect in newborns. Her son was born perfectly healthy, or so they thought, until a nurse suspected a problem. When her baby was just three days old, doctors performed surgery to repair a coarctation of the aorta on a heart the size of a walnut, and Amy’s path in life was forever altered. I vividly remember being completely overwhelmed with information and feeling lost when my son was diagnosed,” Amy said. “I also felt a little bit of survivor’s guilt. My son did very well and is thriving today but watching families who had been in the hospital with their kids for months or even had to leave the hospital without their babies, inspired me to want to do more, to give back. I felt called and in a unique position to help.” Amy volunteered as an advocate for CHD issues and eventually co-founded the Pediatric Congenital Heart Association, where she is the Director of Programs. In her role with PCHA, she works with patients, families, providers and policymakers to educate and advocate around…
Physicians with Heart
When Benjamin Toole, MD, was growing up in metro Atlanta and going to college and medical school in Georgia, he didn’t envision doing the work he does today for Sibley Heart Center Cardiology. But he has found his perfect niche as a “road warrior,” bringing top-notch pediatric cardiac care to patients and families in his adopted hometown of Albany as well as Thomasville and Valdosta. “I always liked the people and the pace of life down here in South Georgia, but I never imagined I’d be here for my job,” Dr. Toole said. “When I joined Sibley in 2014, the Albany clinic was only open two days per week. Patients were predominately going to Macon, Columbus, Atlanta and elsewhere to get cardiac care, including fetal echoes. We established a full-time clinic in Albany, and we also opened the clinics in Valdosta and Thomasville. Now we can bring the same high-quality care patients would get in Atlanta much closer to home.” Dr. Toole says that he and his team offer a comprehensive program that helps to open avenues for patients to the rest of Children’s Healthcare of Atlanta, establishing them with other subspecialists they may need. In a town the size…
Georgia Heart Family Works Together to Raise CHD Awareness, Provide Hope
In 2016, Shelly and Brian were looking forward to starting their family. They were thrilled when they learned that Shelly was pregnant at the age of 39 with their first child. Although they knew there could be some risks to the pregnancy, they never expected to hear the words “Congenital Heart Disease.” At Shelly’s 20-week ultrasound, they were shocked to discover that their baby would be born with Double Outlet Right Ventricle (DORV) a rare congenital heart defect, as well as Ventricular Septal Defect (VSD) and TGA, transposition of the great arteries. In DORV, the pulmonary artery and the aorta — the heart’s two major arteries — both connect to the right ventricle. Doctors called Sibley Heart Center Cardiology the same day to get Shelly on their schedule. “Everything moved very quickly from the day of the ultrasound,” Shelly said. “I didn’t know anyone around me who had a child with CHD, and the doctors warned us that while we could research it on the internet, we’d see more negative outcomes than positive. It was scary, but our first meeting with Sibley really changed the trajectory of the pregnancy. They made us feel comfortable and reassured us that we had…
Children’s Muscular Dystrophy Clinic Offers Multidisciplinary Approach
Muscular Dystrophy, a group of diseases that cause progressive weakness and loss of muscle mass, is caused by genetic mutations that affect the proteins needed to form healthy muscle. Because the heart is a muscle, MD can cause enlargement and scarring of the heart and compromise the “squeeze” of the heart muscle. In addition to affecting heart function, MD can also affect heart rhythm. Symptoms of the most common variety of MD begin in childhood and are mostly seen in boys, given the way it is passed down through families. Other types can surface later in adolescence or adulthood. While there is no cure for MD, it can be treated with medications and therapies designed to minimize symptoms and slow its course. Some patients may become candidates for heart transplants. Meghann G. McKane, MD, is a cardiologist in the multidisciplinary Muscular Dystrophy Association (MDA) Clinic, which provides comprehensive diagnostic and treatment services for children with neuromuscular disorders. Because the symptoms of MD vary among patients and all the organ systems of the body work together, the MDA clinic offers families the benefit of stacked appointments, so they don’t need to travel widely for optimal care. “The clinic includes specialists in…
Lifelong Heart Friends: Garrison and Harley
When Garrison was just 7 years old, he met Harley, 8, at Camp Braveheart. Declaring her the prettiest thing he’d ever seen, he asked her to dance. Still connected six years later, Harley recently returned the favor by asking Garrison to her first high school homecoming dance. Garrison was diagnosed at birth with Hypoplastic Right Ventricle, which was corrected with a transannular patch. Jennifer was told her newborn’s life expectancy could be anywhere from eight days to 80 years, and she was cautioned that his little heart was too weak to even handle her gently stroking his arm. Harley was diagnosed with Pulmonary Valve Stenosis and Ventricular Septal Defect (VSD) at birth. She was able to go home at 3 days old, but it took her two months to gain a single pound, said her mom, BJ. Harley underwent surgery to patch the VSD. Doctors continue to watch the pulmonary valve as she grows and still has regurgitation. Both BJ and Jennifer admit to being nervous when they sent their children off to Camp Braveheart, where they don’t have contact with their kids for a week. “The first year I sobbed,” Jennifer said. “It was the worst week of my…
Physicians with Heart
When people ask Nikhil Chanani, MD, whether he finds it hard to work on holidays, he answers that he’s never found it challenging. For many families, having a hospitalized child is probably the worst experience in a family’s life, but he and the rest of the Children’s Healthcare of Atlanta Heart Center staff truly believe that anything they can do to make the experience better is worth it – especially during the holidays when emotions are particularly heightened. What impresses me about Sibley Heart Center Cardiology and CHOA is that everyone works hard, from the most senior members to the most junior, even during the holidays,” Dr. Chanani said. “Everyone is happy to be here, and we all get why we’re here. There is a commitment at every level to take care of patients, and everyone goes above and beyond to do that. No one comes in to just punch a clock. There are many great programs out there, but one thing that makes CHOA unique is its culture, which I think translates into better patient care.” The larger community seems to agree and often does its part to build up the culture. Dr. Chanani said that in his second…
Georgia Heart Dad Launches Support Group to Help Families Like His
Just six weeks after Brantley and Briana’s gender reveal party, where they learned they’d be having a third son, they went in for a second ultrasound to look at the baby’s anatomy. Expecting no further surprises, they were unprepared to hear the news of what doctors saw. Their baby was diagnosed with Hypoplastic Left Heart Syndrome (HLHS), a complex and rare heart defect in which the left side of the heart is critically underdeveloped. “When you’re diagnosed with something like that, the access to information these days is both a blessing and curse,” Brantley said. “We were told, ‘Do not Google this. Do not get on the internet because it’s just going to scare you.’ Of course, the first thing my wife did when we got in the car was look up HLHS.” Brantley said the next 20 weeks until Isaac’s birth was “basically sheer terror” but the doctors and staff at Sibley did their best to prepare the couple for what was to come. They had time to research, ask questions and even changed Briana’s obstetrician so she could deliver closer to Egleston. The cardiologist was fantastic, and he told us what to expect,” Brantley said. “He assured us that, with today’s technology, they were…
Not Just a Heart Patient: Paige’s Heart Transplant Journey
When Paige didn’t gain weight between her two- and four-month-old appointments, doctors began treating her for acid reflux. But when her gastroenterologist noticed that her breathing was distressed, he called for a chest X-ray. It showed something her parents never expected: a very enlarged heart, which led to a diagnosis of Dilated Cardiomyopathy. Their newborn baby was in heart failure. “We were in complete shock,” said mom Kellye. “After that day, we spent about six weeks in the hospital, trying to wean her from medications while maintaining her weight. It was scary. They told us that with her condition, a third of kids can take meds, a third can kind of hang out where they are and a third will not make it.” When the heart failure clinic at Egleston determined that Paige’s kidneys were failing at 8 months old, they said it was time to list her for a heart transplant. Although finding a match would be somewhat easier because she hadn’t had any surgeries yet and her enlarged heart had created ample room in her chest cavity, Kellye and her husband Nate were told they would likely have to wait for three to six months for a heart.…
Children’s Pediatric Heart Transplant Program First and Only in Georgia
With an average of 16 heart transplants performed each year, the Children’s Healthcare of Atlanta Heart Transplant Program is part of an elite network of programs in the world that perform more than 10 transplants per year. It is the only pediatric heart transplant program in Georgia. The program began in 1988 and is now led by Kirk Kanter, MD, Surgical Director, and Chad Mao, MD, Medical Director. The Advanced Cardiac Therapies program, which includes Children's Heart Transplant team, cares for infants, children and young adults before, during and after pediatric heart transplantation. The Advanced Cardiac Therapies program also includes the Ventricular Assist Device (VAD) program, which uses surgically placed mechanical pumps to support heart function and blood flow in people with weakened hearts. There are two broad categories that can indicate the need for a transplant: cardiomyopathy, which consists of heart muscle disorders, and congenital heart disease (CHD), which features anatomical or structural abnormalities of the heart. Most cases will not be severe enough to require a transplant, but if a child’s condition is no longer amenable to surgeries or medication, he or she may be evaluated for placement on the heart transplant list. Patients are referred to our…
Physicians with Heart
William Mahle, MD, Co-chief, Children’s Healthcare of Atlanta Heart Center, and CEO, Sibley Heart Center Cardiology As a pediatric cardiologist, William Mahle, MD, wants to be able to look himself in the eye each morning knowing that he can assure his patients’ parents that they cannot get better care for their children anyplace else. “If I can’t say that, I either need to change or refer them elsewhere,” Dr. Mahle said. “I must have the internal integrity to know, without hesitation, what I would say to a parent who asked if I would want my own kid to be cared for by this hospital and this doctor. The answer should always be yes.” Dr. Mahle joined the Children’s Healthcare of Atlanta Heart Center in 2001, where he is now Co-chief and CEO of Sibley Heart Center Cardiology. He has achieved national recognition for his leadership in pediatric cardiology and has published more than 150 research and review articles, four book chapters and is an accomplished national and international speaker. Dr. Mahle came from Philadelphia and says the unique culture at Sibley drew him to Atlanta. "I’m in a very fortunate position to have a job as a physician and particularly…
Patient Returns to Sibley to Share a Big Heart with CHD Families
Former Sibley patient Matthew Gunther was diagnosed with Tetralogy of Fallot at birth, and he had four heart surgeries and three back surgeries in the years that followed. Now 31, he invests his time in supporting other kids and young adults with CHD and their families. Matthew’s mother, Donna, was a founding parent of Kids at Heart when he was a child. Matthew still attends every family dinner, and he loves the opportunity to talk to new CHD families. “It can be a really scary moment when kids get diagnosed,” Matthew said. “Families feel like they are entering a whole new world, and they can feel alone in it. But through Kids at Heart, I get the chance to talk to brand-new families and let them know there are tons of us out there. I’ve gotten to see kids grow up in the program and graduate from high school. I’m glad we have this program to connect us.” Matthew also has volunteered since 2008 with Camp Braveheart, which he attended as a camper beginning at the age of 7 when it was still just a weekend camp. Some of his first campers have returned to camp as counselors. I’ve met…
What Procedures Take Place in the Cath Lab?
Nathan was diagnosed at age 6 with a left pulmonary artery that wasn’t connected properly. Doctors proposed placing a stent through the pediatric cardiac cath lab to open his left artery, which was about a fourth of the size it should have been. The hope was that by placing a stent and allowing blood to flow through, the artery would grow large enough for doctors to surgically connect his artery correctly in the future. The procedure was successful, saving Nathan from additional open heart surgery, and doctors reconstructed the pulmonary artery to connect successfully two years later. Dennis Kim, MD, PhD, is director of the Pediatric Cardiac Catheterization Laboratories at Children’s Healthcare of Atlanta Heart Center, where four cardiologists who specialize in catheter-based cardiac procedures diagnose and treat children with congenital heart disease. Children’s Heart Center has one of the busiest pediatric cath labs in the country, with the ability to provide the entire spectrum of therapeutic options. In addition, they are part of several device trials for new innovative devices coming onto the market. Cardiac catheterization is a procedure where a long thin tube called a catheter is inserted in an artery or vein in the patient´s groin, neck…
Fetal Echo Reveals the Structure, Function of Baby’s Heart
Fetal echocardiography uses an ultrasound probe to generate sound-based images of a baby’s heart, allowing doctors to better view its structure and function before birth. The majority of Congenital Heart Defects (CHD) can be diagnosed with fetal echo, with some exceptions. Some problems, such as very small holes in the heart, are difficult to detect even with advanced equipment. The most common reason a pregnant woman visits Sibley Heart Center Cardiology for a fetal echo is upon referral from her obstetrician or perinatologist. They may detect something unusual on a routine ultrasound and suspect a problem with the heart,” said Erik Michelfelder, MD, Director of Fetal Cardiology at Children’s Healthcare of Atlanta Heart Center. “They will then send the mom to us to confirm their findings and make a detailed diagnosis.” Other maternal indications that can prompt a referral for a fetal echo include a family history of heart disease, especially if either mother, father or a prior child has a diagnosis of CHD. If the mother is on medication that has the potential to cause birth defects, or if she has certain autoimmune diseases or diabetes, a fetal echo may be performed. Sibley cardiologists are also asked to evaluate…
Former Patient Returns to Sibley to Launch Career
At 16, Chelsea Parsons experienced an episode at a cross country meet in which her heart rate climbed to an alarming 200 beats per minute. Paramedics were able to bring it down, but she was referred to Sibley Heart Center Cardiology in Alpharetta for further cardiac evaluation. She was diagnosed with atrioventricular nodal reentry tachycardia (AVNRT), the most common type of supraventricular tachycardia. AVNRT tends to occur more often in young women, and episodes often start and end suddenly. It occurs because of a reentrant electrical circuit located in or near the AV node that causes the heart to beat prematurely. The AV node is important in regulating the passage of electrical impulses from the upper (atria) to the lower (ventricles) chambers of the heart. “We spent a couple of months of trying to work out how aggressive it was, if it was common and whether I could take medication for it or just deal with it,” Chelsea said. “After having a few more episodes, we decided for ablation.” While she was nervous about going under anesthesia for the first time, Chelsea said the team at Sibley made her and her parents feel comfortable, and the ablation was a total…
Kids at Heart Connects Families with Others Who “Get It”
In the mid-1990s, a small group of "heart parents" seeking community with one another started a potluck dinner in the Egleston Hospital conference room. What began as a simple desire to get to know other families walking the same congenital heart disease (CHD) path has grown into a program called Kids at Heart, which now serves about 2,000 families. The program is run by two staff coordinators, Kati Keyes and Alison Mueller. As a parent, I enjoyed seeing SO many other heart families and feeling like we were where we belonged. That there were people who KNEW what we were going through.” Kids at Heart, which is 100 percent donor funded, administers an active Facebook group of 1,000 parents and hosts many events throughout the year designed to connect young heart patients and their families to each other. Every event is free to CHD families, who are often facing heavy financial burdens associated with their child’s care. “Everybody has so much that they juggle. Our families tell us that they might never be able to spend a day as a family doing the some of the activities we plan for them and how much they value these moments of normalcy,”…
Never Count Them Out: Heart Warrior Kid Shows Her Strength
Although Brandy Spradlin’s pregnancy was high risk and she had nearly 30 sonograms during the course of it, she and her husband had no idea that anything would be out of the ordinary when their daughter was born. The Sibley doctor who saw Charli Jane within hours of Brandy’s birth said five different things were going on with her heart, and she had a 99.9 percent chance of having the chromosomal abnormality, 22q Deletion Syndrome. She was life flighted to Egleston from Piedmont Fayette Hospital. “My youngest was 12 at the time,” Brandy said. “Our other three kids had never even been sick, beyond the occasional strep throat. We were taken by complete surprise.” Charli had her first heart surgery at just five days old and another at 7 months to treat her multiple diagnoses of Interrupted Aortic Arch + VSD, Subvalvular Aortic Stenosis, and Branch Pulmonary Artery Stenosis . Now 9, she will likely need more surgeries as she grows, but doctors say her current heart repairs may last until middle school. Brandy says that Charli’s pediatric cardiologist, Heather Phelps, MD, goes above and beyond for her family. Charli is comfortable at her cardiology appointments with Dr. Phelps, asking…
Feed the Heart Allows Families to Focus on Caring for Their Children Instead of ‘What’s for Dinner?”
In 2015, Vicki Haug was a nurse at Children’s Healthcare of Atlanta. One of her cardiac patients belonged to a family of seven, who was traveling back and forth to Egleston from Augusta as their young daughter waited for a heart transplant in the hospital. Weeks had turned into months, and one evening, the family confided to her that they didn’t have anything for their dad to eat. Vicki’s sister was in treatment for cancer, and she knew well how expensive it was to eat at the hospital for days and weeks on end. Her heart went out to them. Vicki wrote a proposal for the Cardiac Family Advisory Council requesting that the group provide a snack cart once a day and dinner once a month for cardiac patient families. The Director of Cardiac Services encouraged her to “give it a shot,” and her supervisor, Becky Johnson, helped Vicki acquire a cart and find space at Egleston. With a generous initial donation from a Sibley cardiologist and the enthusiastic participation of cardiac families who were eager to help each other, Feed the Heart was born. “It costs about $20 a day for one parent to eat here,” Vicki said. “They…
Understanding the Heart-Brain Connection Leads to Better Patient Care
While the heart-brain connection is not completely understood in medical circles, doctors do know that the connection exists. They develop at the same time in utero, and the heart provides critical blood flow to the brain. When the heart is compromised, it may be unable to adequately meet the blood flow demands of the brain, putting a child at risk for motor and language delays, learning difficulties, attention problems and social challenges. “Babies can be born with smaller brains or a neurological injury like stroke or cardiac arrest or any temporary stop blood flow to brain can cause developmental delays and challenges later in life,” said Nneka Morris Alexander, PhD, pediatric psychologist for cardiac services, Department of Neuropsychology. “In addition, kids who have surgery within their first few months of life may be at higher risk of having developmental delays.” Children’s Healthcare of Atlanta’s Cardiac Neurodevelopmental Program provides critical mental health support to cardiac patients and families, as these patients are typically hospitalized for long periods of time. Dr. Alexander oversees inpatient screening and treatment of medically related trauma and stress in patients and families. She also conducts outpatient screenings of developmental skills for infants and toddlers with congenital heart…
Preventing Sudden Cardiac Death Requires a Two-Pronged Approach
In a nutshell, Sudden Cardiac Arrest (SCA) means a person ceases to have an effective heartbeat. While a heart attack is a “plumbing” problem more common to adults, an SCA in pediatric or young adult patients is more likely to be “electrical.” Most people don’t think of kids as having heart problems at all, but there is a long list of pediatric cardiac disorders that could lead to SCA. Most are very rare, and some are inherited. Once diagnosed, any of these cardiac conditions should be closely monitored to prevent SCA. "When a child has SCA, it’s common that people will describe the child as having been perfectly healthy,” said Robert Campbell, MD, pediatric cardiologist at Sibley Heart Center Cardiology. “However, they were not perfectly healthy, just undiagnosed.” Real life examples of this would be Ella, who had SCA during a basketball game, and Claire, who experienced cardiac arrest during a volleyball game. You can watch Claire's story here. Dr. Campbell said the incidence of pediatric/young adult sudden cardiac death is not known but is estimated to be about 1-4,000 per year in the U.S. Not all cases of SCA result in death because people are resuscitated or the SCA…
Hypertension in Kids Often Treated by Lifestyle Changes
The Children’s Preventive Cardiology Program provides services for kids with conditions that put them at risk for early heart attack and stroke. When risk factors such as obesity, high cholesterol, diabetes and hypertension are properly treated, often with just a healthy diet and exercise, early cardiovascular disease may be prevented. One of the risk factors of early cardiovascular disease is hypertension or elevated blood pressure. Hypertension describes the force of the blood pushing against the artery walls. What is considered elevated blood pressure in children varies based on age and height. When a child reaches age 13, adult data is used, and blood pressures of 120/80 are considered elevated. “Hypertension in kids older than three frequently displays no signs or symptoms,” said Michelle Wallace, MD, pediatric cardiologist at Sibley Heart Center Cardiology. “Sometimes they can have frequent headaches or bloody noses. Some kids have white coat syndrome, where their blood pressure is only elevated in the doctor’s office.” While hypertension can be connected to conditions like obesity, kidney disease, an endocrine or heart problem, such as narrowing of the aorta, in most cases doctors don’t have a good cause for hypertension in children. Hypertension can cause increased thickness of the…
Born with Half a Heart, Emma Shows What it Means to Have a Heart of Gold
She was born with half a heart, but you’d never know it. In fact, the title Emma Anderson, 9, is most likely to be known by today is the strong girl with the heart of gold. When she was born, Emma’s parents, Robin and Trey, wondered aloud why she looked so purple. It was at first chalked up to a traumatic labor and delivery, but their world quickly turned upside down when a nurse thought she heard something not quite right with Emma’s heart. Nurse Jocelyn alerted Dr. Campbell, the head of cardiology at Children’s Healthcare of Atlanta, and he did an echo. The news was not good. “We were in total shock, and we knew it was really bad when they told us that the helicopter we heard landing on top of the hospital was for Emma,” Robin said. Emma was life-flighted to Egleston and diagnosed with Hypoplastic Left Heart Syndrome (HLHS), a serious heart defect in which the left side of the heart does not fully develop during pregnancy. The right side of the heart must pump blood to both the lungs and the rest of the body, which reduces the blood flow to organs. If not treated,…
Summer is the Time for Sports Physicals
Summer marks a time when many parents are making appointments for their student athletes to get their sports physicals. Required by most school systems to participate in school sports, the sports physical screens for many conditions, including heart disease. Sports physicals can be completed by any of several different healthcare providers, including pediatricians, family doctors, nurse practitioners or walk-in clinics. The American Academy of Pediatrics publishes the Preparticipation Physical Evaluation forms that are most often used for schools. These forms contain questions which identify “red flag” items that may indicate underlying heart disease in student athletes, said Sibley pediatric cardiologist Brian Cardis, MD. “For instance, if there is a history of dizziness, fainting, chest pains or extreme shortness of breath with exercise that can’t be explained by other conditions or a family history of sudden cardiac arrest (SCA), drowning, or Sudden Infant Death Syndrome (SIDS), the pediatrician or provider may refer them to us for further evaluation,” Dr. Cardis said. Sudden cardiac death in student athletes is fortunately very rare, with only about one occurrence in Georgia each year. Screening hundreds of thousands of children each year to find the one who could have a poor outcome is a bit…
Ventricular Septal Defect: What You Need to Know About One of the Most Common CHDs
Mallory Dorris, 16, was diagnosed at just one week old with atrial septal defect (ASD) and ventricular septal defect (VSD). She struggled for 12 weeks to put on weight, and finally she could wait no longer for surgery. After open heart surgery to repair her congenital heart defects, according to her mom Dana, Mallory transformed immediately from a “failure to thrive” baby to a normal, healthy child. A VSD occurs during fetal life when the wall that forms between the two bottom chambers of the heart fails to fully develop, leaving a hole. The hole allows the oxygenated (red) blood to mix with the oxygen-poor (blue) blood, and ultimately, too much blood is sent to the lungs causing a fluid build-up. This extra blood being pumped into the lungs forces the heart and lungs to work harder. Over time, if not repaired, VSDs can increase the risk for complications including heart failure, high blood pressure in the lung arteries or irregular heart rhythms. Congenital heart defects occur in approximately 1 percent of children. VSDs represent one of the most common forms of congenital heart defects. The signs and symptoms of a VSD depend on the size and position of the…
Difficult to Diagnose, POTS Can Lead to Problems for Adolescents
Postural orthostatic tachycardia syndrome (POTS), the most common of several types of dysautonomia, is a condition that affects blood flow. Blood usually flows through the body at a steady rate, no matter whether a person is sitting, standing or lying down. However, the blood flow in people with POTS changes when they change positions, staying in the lower part of their bodies. Their hearts beat faster to get blood to the brain, causing dizziness, lightheadedness or fainting and a drop in blood pressure. Left untreated, the frequent bouts of dizziness can kick off a host of other problems, including chronic dehydration, headaches, anxiety, panic attacks, fatigue, difficulty sleeping, pain and loss of appetite. “POTS often begins as young ladies go through puberty, and well over 90 percent of these patients are female,” said Sibley pediatric cardiologist Michael McConnell, MD. “It doesn’t make any difference why they get dizzy. Getting dizzy becomes its own disease process, meaning that every time you stand up and get dizzy, the body sends out adrenaline to push up blood pressure. The frequent adrenaline surges make more urine, which causes people to become dehydrated, and the symptoms continue from there.” Patients can go through a succession…
Sibley’s Multi-Disciplinary Program Ensures Coordinated Management of Pulmonary Hypertension
Pulmonary hypertension is a disorder of the arteries in the lungs that results in elevated blood pressure in the lungs and strain on the heart. Sometimes, pulmonary hypertension has no known cause, but it occurs more frequently as a consequence of another disease, such as congenital heart disease, or it can be associated with prematurity in babies. Pulmonary hypertension, while relatively rare, can be complicated to manage and treat, and it tends to be a much more serious condition than high blood pressure in the body. Because it affects both the heart and lungs, Sibley offers a team approach that combines the expertise of cardiologists, pulmonologists and dedicated nurse practitioners along with social workers and researchers. At Sibley, we have clinical inpatient and outpatient components of the program,” said Usama Kanaan, MD, Director of the Pulmonary Hypertension Program at Children’s Healthcare of Atlanta. “We have a weekly outpatient clinic staffed by a cardiologist, pulmonologist and pediatric nurse practitioner and an inpatient component in which we consult on patients in the hospital. About 40 percent of the clinic population is premature babies.” How curable and treatable pulmonary hypertension is depends on the type. The majority of babies whose pulmonary hypertension is…
How a News Story Saved Sarah Anne’s Life
In 2003, Sarah Anne Voyles was a normal, active 13-year-old with a happy childhood behind her. Her only complaints as a child had been severe asthma and allergies, which had caused her parents to do everything they could to make their home as hypoallergenic as possible. One morning, Sarah Anne went for a run with her older sister, who was home from college. She only made it a few yards before feeling so out of breath that she turned around and nearly collapsed at her mom’s feet. She looked gray, and her family was alarmed. Two weeks prior, the deaths of two student athletes in their area had been reported in the news, and their symptoms seemed eerily similar to Sarah Anne’s. Her mom insisted on more tests, and they ended up at Sibley Heart Center Cardiology. Sibley cardiologist Jim Sutherland, MD, who is now retired, finally uncovered the problem. Sarah Anne had an atrial septal defect (ASD) -- a 33 mm hole where there should have been a wall dividing the left and right atriums. Because the hole was large, doctors told the family it was like blowing air into an open room instead of through a straw, making…
Sisters at Heart
Two sisters, two CHD diagnoses, and Sibley Heart Center Cardiology has been part of their lives from the beginning. Brooke Dorris, 23, was diagnosed with sinus venosus atrial septal defect at 20 months old, and Mallory Dorris, 16, was diagnosed at one week old with ASD and VSD. Both girls had open heart surgery to repair their CHDs at young ages with the same pediatric cardiothoracic surgeon, Kirk Kanter, MD. Their pediatric cardiologist, Robert Campbell, MD, has followed the sisters into adulthood. Brooke’s CHD took her parents totally by surprise as she had appeared to be a perfectly healthy baby and toddler before she contracted a cold in 1997. When doctors put her on albuterol, which causes the heart to beat faster, her heart murmur was enhanced and identified for the first time. Figuring it would turn out to be innocent, her mom and dad, Dana and Jeff, took Brooke for further testing at Sibley. I was at Sibley looking around at all the poor little babies and little did I know in a few minutes Brooke would be one of them,” Dana said. Mallory was a different story. She was lethargic right off the bat and had a bad case…
How Am I Going to Pay This Bill? Preparing for the Financial Aspects of CHD
When a family learns that their child has a congenital heart defect, the financial aspect of that serious diagnosis is often the last thing on their minds. However, along with providing world-class pediatric cardiac care and treatment, Sibley Heart Center Cardiology walks with families every step of the way, including helping them to prepare financially. "The first thing they should know is similar to any time their child gets sick,” said Teresa Traugott, Senior Business Office Manager at Sibley Heart Center Cardiology. “Ask yourself, ‘What insurance do I have, what is my deductible, what will I owe and what are my options?’” Some families have Medicaid, and some have excellent insurance, but few will leave the hospital with a zero balance. Some families have low-cost health insurance plans with deductibles as high as $10,000, which can be a heavy burden after a heart surgery and stay in the hospital. Ask questions up front if you can,” Traugott said. “Sometimes a parent gives birth to a child with health problems, and they don’t know what to ask or expect. But on return procedures and office visits, you can ask, ‘What am I going to owe?’” Children’s Healthcare of Atlanta and Sibley…
Like Father, Like Son
Ryan French always said he hoped none of his kids would have a heart condition. Diagnosed at 6 weeks old with a large ventricular septal defect (VSD), or hole in his heart, Ryan underwent open heart surgery when he was just 3 months old. He knew how serious CHDs could be. His first two children showed no signs of CHD, but his third child, Connor, was a different story. Ryan’s wife, Alicia, remembers that technicians spent two hours getting images of Connor’s heart when she was 26 weeks pregnant, but his position did not allow them to see what they would discover two days after his birth. He was born with Tetralogy of Fallot with a double outlet right ventricle and parachute deformity of the mitral valve. At 3 months old -- just like his dad -- Connor underwent surgery to repair his CHD. “It really didn’t hit me until we were admitted that Friday night in September,” Alicia said. “He had done so well. He was gaining weight, he was never on oxygen, never in the NICU. He was perfect! But when they said he wasn’t coming home from the hospital until he had surgery and that he was…
Project S.A.V.E. Prepares Schools to Save Lives
When sudden cardiac arrest occurs outside of a hospital, a person only has about a 10 percent chance of survival. However, if the cardiac arrest occurs in a Georgia school that has been prepared for such an event through Project S.A.V.E., the survival rate jumps to 80 percent. Since December 2007, 116 lives have been saved in Georgia schools, including 61 students, and there are many more “downstream” saves that occur after people receive Project S.A.V.E. training. Children’s Healthcare of Atlanta started Project S.A.V.E., which stands for Sudden cardiac arrest Awareness Vision for prevention Education, in 2004 with the mission of promoting and improving prevention of SCA in children, adolescents and others in Georgia communities. Project S.A.V.E. brings automated external defibrillator (AED) and CPR training directly to Georgia schools, athletic leagues and community centers, like Big Brothers Big Sisters. June 1-7 is National CPR and AED Awareness Week, a week set aside by Congress in 2007 to highlight how lives can be saved if more people know CPR and how to use an AED. Richard Lamphier is Clinical Program Manager for Project S.A.V.E. He travels around Georgia conducting CPR and AED training and recognizing schools as “Heart Safe.” According to…
Meet Sibley Heart Center Cardiology’s Social Worker
Brittney Ray is the outpatient social worker at Sibley Heart Center Cardiology. Originally from California, she found her home in Georgia and earned her bachelor’s degree in social work from Clark Atlanta University. Brittney began her career working for The Division of Family and Children Services (DFCS) as an investigator in Child Protective Services. She also worked with both adults and children in the fields of mental health and substance abuse. Children and families have always been her passion, and she is grateful to be able to make a difference in the lives of the families at Sibley. What do you do here at Sibley? My role at Sibley as a social worker is to offer support to our families who are facing various hardships. Some families may need help financially or assistance navigating healthcare and social security. Other families may need assistance coping with their child’s medical condition and adjusting to all the extra care that their child needs. My role is to assess each family’s situation and to identify what resources are needed, while offering support and encouragement. What led you to this career path? I’ve always been drawn to a career where I am working directly with…
CHD Myths and Fears Debunked
Until your child is diagnosed with a congenital heart defect (CHD), you may have never given much thought to what you know or don’t know about the subject. Parents can face a diagnosis with preconceived notions about CHD that are simply not true. Sibley pediatric cardiologist Ben Toole, MD, talked with us to debunk some of the common myths and fears that surround CHD. Myth: Many children who are born with a heart defect do not survive into adulthood. This may be the No. 1 fear that grips parents when they hear their child has a CHD, but it’s untrue. That is a massive misconception,” Dr. Toole said. “By far, most kids with CHD survive well into adulthood and live normal, long and healthy lives. Most forms of CHD in children are minor forms that will not have long-term effects on the duration or quality of life.” Myth: Congenital heart disease means you can’t have an active life or a normal childhood. Not true, and in fact, there are good examples of people with CHD who are world-class athletes including Olympic snowboarder Shaun White. White has a history of Tetralogy of Fallot and has undergone three operations to repair his…
The Heart of a Mother
When you have a family of eight children, with both parents working and running a business, it pays to be a planner. But when two of those kids have serious heart conditions, it’s also important to be flexible, since you never know when you may end up in the hospital. Courtney Lott and her husband Emory recently did that juggling act when their daughter Emmy, 9, was at Children’s Healthcare of Atlanta at Egleston for 21 days in March. Emmy has a small hole in her heart called a patent foramen ovale (PFO) in addition to her sickle cell anemia. Daughter Aniya, 11, has Down Syndrome, several holes in her heart and had surgery for her AV canal as an infant. With medically fragile children, you learn to be less rigid and to take one day at a time,” Courtney said. “We plan less and enjoy our kids more. We try not to stress about the future.” Although it can be devastating to learn that your child has a heart problem, Courtney says the doctors at Sibley have been amazing. She appreciates their patience and kindness and the ways they go the extra mile for the kids – and their…
The Miracle of Hurricane Maria
As Hurricane Maria bore down on Puerto Rico with 150 mph winds on Sept. 20, 2017, Arlene Torres was preparing to give birth to a baby boy who was not predicted to live. Just 18 weeks into her pregnancy, Arlene received the devastating news that her son had several serious heart defects. She chose to continue the pregnancy and now her due date was near, but a Category 4 storm was leaving a trail of destruction not seen in Puerto Rico for 100 years. When it was over, the entire island was without power and the hospital where Arlene was scheduled to give birth was destroyed. So, on Sept. 25, Arlene was transferred to Atlanta, where Jesus Fernando came into the world four days later. Jesus was born with an extremely complex congenital heart disease consisting of a large hole in the heart that extended from the upper chambers to the lower chambers and one ventricle instead of two -- but he was born alive. “His arrival in our lives was to make us believe that the miracles of God are possible,” Arlene said. “We are so happy to have him in our lives.” Jesus Fernando had two heart surgeries…
El milagro del Huracán Maria
Cuando el huracán María derribó a Puerto Rico con vientos de 150 mph el 20 de septiembre de 2017, Arlene Torres se estaba preparando para dar a luz a un niño que no se esperaba que viviera. Apenas 18 semanas después de su embarazo, Arlene recibió la devastadora noticia de que su hijo tenía varios defectos cardíacos graves. Ella optó por continuar con el embarazo y ahora que su fecha de parto estaba cerca, pero una tormenta de Categoría 4 estaba dejando un rastro de destrucción que no se había visto en Puerto Rico durante 100 años. Cuando terminó, toda la isla estaba sin electricidad y el hospital donde Arlene tenía programado dar a luz fue destruido. Entonces, el 25 de septiembre, Arlene fue trasladada a Atlanta, donde Jesús Fernando vino al mundo cuatro días después. Jesús nació con una enfermedad cardíaca congénita extremadamente compleja que consiste en un gran agujero en el corazón que se extendía desde las cámaras superiores a las cámaras inferiores y un ventrículo en lugar de dos, pero nació vivo. "Su llegada a nuestras vidas fue para hacernos creer que los milagros de Dios son posibles," dijo Arlene. "Estamos muy felices de tenerlo en nuestras…
Atrial Septal Defect
The atrial septum is the wall between the two upper chambers of the heart, and an atrial septal defect (ASD) is an abnormal hole in the wall. ASD, a heart problem that is present at birth, allows the blood from the high-pressured left side of the heart to cross into the lower pressured right side of the heart, increasing the work load of the right side. Over time, the excess blood flow to the right side of the heart and the lungs can result in right heart enlargement and dysfunction and can also result in serious permanent damage to the blood vessels in the lungs. ASDs can occur as isolated heart defects or may occur in combination with other congenital heart defects, according to Neill Videlefsky, MD, pediatric cardiologist at Sibley Heart Center Cardiology. ASD is sporadic, not usually inherited, but in some cases, individuals may have a family history of this defect due to a specific genetic mutation. These genetic disorders are often associated with other congenital cardiac and extracardiac abnormalities. Atrial septal defects are common, accounting for approximately 10 to 15 percent of congenital heart disease. “Most patients with an atrial septal defect are asymptomatic, and the ASD…
How Christian Captured His Journey for the World to See
When Carvina was pregnant with her son, there were some suspicious warning signs that there could be complications, but she had no idea that her baby would end up at Sibley Heart Center at two days old with a heart murmur and three holes in his heart. At four months old, Christian underwent a cardiac catherization procedure, and at six months old, he had open heart surgery to remove a faulty valve. “As you can imagine, it was nerve-racking as a mom to have all that done at such a young age,” said Carvina, who works at the Spelman College Student Health Services Center. “He was so small.” Christian, now a third-grader at an Atlanta technology magnet school, recently made a video for school that details his journey. Within the first two weeks of third grade, Christian was promoted to the magnet school and gifted program, where he thrives in front of the camera and excels in his studies. “Needless to say, he has quite a personality,” Carvina said. “People tell me I should take him for acting auditions. He’s very bright. His heart problems didn’t affect him in that way at all.” Christian is a long way from those…
Camp Braveheart Helps Kids Remember They are Not Alone
The first time Camp Braveheart kids see the swimming pool, they may hesitate for a beat. As refreshing as the water looks, it’s a moment of unique vulnerability for a child to reveal the scars of heart surgery. However, when they see all their new friends jumping in, it doesn’t take long for them to realize: I’m just like everyone else here.” And it’s not so scary anymore. “Our campers say that camp is the absolute highlight of their summer,” said Kati Keyes, co-director of Camp Braveheart. “Parents say they love that their kids can just be kids here. It helps them feel less isolated to be around children who are dealing with similar circumstances. That’s what makes camp so special.” Camp Braveheart is held each year in Rutledge, Ga., at Camp Twin Lakes, a network of camps that provides life-changing, therapeutic, recreational and medically-supportive camp experiences for children with serious illnesses, disabilities and other life challenges. The Camp Twin Lakes mission is to teach campers to overcome obstacles while creating shared experiences with other children who face similar challenges. Founded in 1995 by Roger and Kathy Flynn, Camp Braveheart continues today in memory of their daughter Ansley. Camp Braveheart…
Xander’s Precious Gift From Another Family
Myra was worried that Garrett would “be gone” from Xander, but we assured her that Garrett would always be with him.
ECHOs and EKGs Reveal Important Information About the Heart
Two of the tools pediatric cardiologists have when they want to gather more information about a child’s heart include the echocardiogram (ECHO) and the electrocardiogram (EKG). Both are noninvasive, painless and quick ways to learn about the heart’s structure and electrical system. ECHO Sibley Heart Center performs about 36,000 transthoracic ECHOs each year. An ECHO uses the same technology used to evaluate a baby's health before birth and is similar to an X-ray, but without the radiation. A hand-held device called a transducer is placed on the child’s chest or on a pregnant woman’s belly and transmits high frequency sound waves, which bounce off the heart structures, producing images and sounds that can be used by doctors to detect heart abnormalities. Children of any age can have an echo performed, and a study can take 30 to 60 minutes to complete, depending on the age of the patient and how comfortable they are in the echo room, said Wesley Blackwood, MD, pediatric cardiologist at Sibley. They do have to lie fairly still for the study,” Dr. Blackwood said. “We have ways to distract them, but the most effective soothers are their families, who can be with them throughout the test.”…
Being in the Right Place at the Right Time Saves a Family’s Life
Jenny wasn’t sure why she and her husband were so set on celebrating their anniversary in Atlanta four years ago. They were new parents to 6-week-old Raylan, who had been fussy all morning at their Smiths Station, Ala., home. It would’ve been typical for them to just stay home, but for some reason, they decided to press on. When Raylan began screaming uncontrollably in the reptile house at Zoo Atlanta, they were about to find out why. “We tried everything to get him to calm down, but nothing worked. When I picked him up, he was sweaty but felt ice cold to the touch,” Jenny said. “We knew something was very wrong.” Jenny, a nurse anesthetist at Piedmont Columbus Regional Hospital, and husband Micheal rushed Raylan to Atlanta Medical Center, then transferred to the Egleston ED. At first, doctors weren’t sure what was wrong and treated Raylan for septic shock. An echo didn’t immediately reveal the eventual diagnosis, made after a cardiac fellow requested a second echo: coarctation of the aorta. Within 48 hours, Raylan was in surgery to repair the defect. A post-op echo then revealed that Raylan had mitral valve disease as well, and his valve was beyond…
Supraventricular Tachycardia in Children: What You Need to Know
When Zeke was almost 2 months old, his mom took him to the hospital when he began throwing up more than he was eating. Immediately, the doctor knew what was wrong. Zeke’s heart was beating at 285 beats a minute, and later soared to 310 bpm, as the staff worked to slow it down through intravenous medication. A top-end heart rate for children is roughly 220 bpm minus the child’s age in years. Rates faster than that can indicate supraventricular tachycardia (SVT), an abnormally fast heart rhythm caused by an electrical short circuit in the top chambers of the heart. Zeke had SVT. It was a scary day for Zeke’s family, but SVT is a highly treatable condition that can be treated safely and effectively in children. “In general, SVT is not life-threatening,” said Peter Fischbach, MD, Director of Electrophysiology at Sibley Heart Center. “It’s mostly just disconcerting and uncomfortable. It’s the unpleasant feeling of having a racing heart rate that you can’t stop.” The pathways in the heart that support SVT are usually present just as a mother is finding out she is pregnant, at about 8-10 weeks of gestation. But just having these abnormal pathways doesn’t mean that…
Rare Conditions Treated with Care by Experts in Aorta and Vascular Program
Sometimes blood vessels can be too large, too small or twisted. When this happens in children’s hearts, they may be evaluated for one of the rare conditions treated by the Aorta and Vascular Program at Sibley Heart Center Cardiology. The Aorta and Vascular Program treats a variety of rare, usually heritable blood vessel diseases, and it is one of very few in the Southeastern U.S. totally dedicated to the diagnosis and treatment of these diseases in children. Dr. Denver Sallee, MD, Director of the Aorta and Vascular Program, and his team are top experts in the field, which can provide great comfort to families facing one of these diagnoses. The conditions treated in the Aorta and Vascular Program include: Marfan Syndrome Loeys-Dietz Syndrome Aortic Aneurysm Bicuspid Aortic Valve (BAV) Ehlers-Danlos Syndrome (EDS) Noonan Syndrome Turner Syndrome Alagille SyndromeWilliams Syndrome Tuberous Sclerosis Aortic Dissection Aortic Ectasia Enlarged or dilated vessels Stickler Syndrome Dilated aortic root or aorta Patients with these conditions often need follow-up care and management. The program clinic offers close monitoring, medical management, educational support, and surgical intervention, if necessary. They also facilitate multidisciplinary coordination of care with ophthalmology, orthopedics and pulmonary physicians. Because of the exceedingly rare nature…
Fetal Heart Rate Paints a Picture of Baby’s Health
Hearing her baby’s heartbeat for the first time can be one of the highlights of a woman’s pregnancy. In fact, checking the rate and rhythm of a baby’s heartbeat with a Doppler ultrasound is a routine part of each visit to the obstetrician during pregnancy. The fetal heart rate tells the doctor important information about the health of the baby. A healthy baby’s heart usually beats 110-160 times a minute in the womb. It speeds up when the baby moves. Fetal heart rates also help count contractions and tell if a mother is going into labor too early. Signs of an abnormality with the fetal heart rate may require a referral to a fetal cardiologist to rule out structural problems with the heart, diagnose the rhythm and do something to manage it, if necessary. Erik Michelfelder, MD, Director of Fetal Cardiology at Children’s Sibley Heart Center, says there are three categories of abnormality when it comes to fetal heart rate: Too fast, too slow and irregular. Too fast The most common reasons for a fetal heart rate that is too fast, known as tachycardia, are supraventricular tachycardia and atrial flutter. “With fast rhythms, we can give medications to the mom, which…
Mason’s CHD Journey – The Glenn, Norwood & Fontan
In 2011, when I was approximately 20-23 weeks pregnant with my first child, Mason, it was discovered that he had hypoplastic left heart syndrome (HLHS). We never thought about terminating the pregnancy and always felt like God chose us for a reason to have this special child. Although, I was in disbelief at first, I just wanted to know what the next step would be and if there was a way to fix his heart. I was sent to see Dr. Neill Videlefsky who reviewed Mason's scans and requested to send them to Dr. Wayne Tworetzky in Boston to see if Mason was a candidate for an experimental procedure called balloon valvuloplasty. In a whirlwind, we found ourselves on a plane to Boston the same night we were notified that Mason qualified. On our first day, we met with multiple teams that would take care of Mason and I during the procedure, which ended up being a success, and at first, Mason showed increased function in the left side of his heart. Unfortunately, as he grew, the growth of the left ventricle began to slow and it was determined that Mason would require all three surgeries; the Norwood, the Glenn,…
Preventive Cardiology – What You Need to Know
The primary goal of preventive cardiology is to develop permanent, healthy habits in kids that will decrease the chances they’ll develop cardiovascular disease as they grow older. Heather Phelps, D.O., a pediatric cardiologist at Sibley Heart Center Cardiology and director of CHOA’s Preventive Cardiology Program, shares her insight into the importance of preventive cardiology. Why Preventive Cardiology is Important “Preventive cardiology has to do with the idea that we can modify some lifestyle habits that can help us decrease our chances of getting cardiovascular disease as we age,” says Dr. Phelps. “Two of the most common reasons a child would need to see a preventive cardiologist is because of hypertension (high blood pressure) or dyslipidemia (high cholesterol), which are two major concerns for kids.” Evaluation and treatment of these problems early in life can improve their long-term cardiovascular health. We are often able to treat these conditions non-invasively, that is without medication and with dietary improvements and increased physical activity. We tailor our recommendations specifically for the individual patient. “Our goal with our patients is to set realistic, gradual lifestyle changes that will have a positive impact on their cardiac health in the future.” Universal Screening for Elevated Cholesterol Not…
Sibley Cardiac Sonographer Uses Own CHD Experience to Help Others
When Dana Jones’ daughter was just 4 years old, she would randomly tell people at Walmart that God told her that her mom was going to die before she turned 5. It became such a common occurrence that Dana had to tell her to stop. Not long after, however, Dana, a cardiac sonographer, found a rapidly growing aortic aneurysm in her own heart. Within days, she was undergoing emergency open heart surgery at the age of 24. Dana was born with a heart murmur and diagnosed with what was thought to be a bicuspid aortic valve (two aortic leaflets instead of three) at age 5. She was treated at Medical Center of Central Georgia in Augusta. Aside from frequent cardiologist visits, she says her childhood was fairly normal. “Growing up, I tried not to let CHD define me,” Dana said. “In fact, I didn’t want any of my friends to know because I didn’t want them to pity me or treat me differently. My parents never treated me any differently from my brothers. They let me decide if certain activities were too much for me.” She also felt heard and understood by her pediatric cardiologist, Dr. Strong, who has since…
Why William is a Miracle
William, a polite 11-year-old boy who loves video games, Legos and math, wrote a poem about a cardiac surgeon at CHOA. Although it was a school assignment, it was entered in the 2018 Reflections National Competition, which had the theme of “Everyday Heroes.” Here is his poem: My Hero When I was only 9 months old A hero was in my life, I’m told – A doctor stood up and did his part To save my tiny, broken heart. When he was prepared and totally ready His hands were oh so very steady. He fixed my little beating heart Just like he had said from the start. I’m so thankful for this hero Because without him, I would have died when I was zero. He tried so hard to save my life. And now one day I’ll have a wife. And maybe a kid or two or three. And with them I can climb a tree! My future is wonderful, and SUPER bright. Because of my hero, without fright. Who was brave and bold and kind as can be And one day, I’ll be a hero For someone like me. As he stated in his poem, William was diagnosed with…
A Little Girl with a Big Heart and Sweet Soul
At 30 weeks pregnancy, my doctor shared her concerns with me about the rate my daughter was growing. Due to Addilyn measuring smaller than the average baby I was referred to and followed by a perinatologist weeks prior to Addilyn being born. After numerous tests and weekly ultrasounds, I was relieved with the news that my daughter was simply smaller. To take all precautions, I was still strongly advised to go through with an early induction. So, at 38 weeks pregnant, I arrived at the hospital anxious and excited to meet my baby girl. Little did I know what was ahead of us. On November 10, 2016 I held my beautiful daughter for the very first time. I will never forget the day Addilyn was born, as many parents will recall, it is an indescribable moment filled with an overwhelming amount of love and joy. While I was able to cherish this moment briefly, my heart was shattered within hours when Addilyn was diagnosed with three heart defects, a VSD, PDA, and PFO. After receiving the news, I remember trying to quickly comprehend and grasp this new reality while I watched the doctors perform numerous echoes on my innocent baby…
Parenting a Child with Congenital Heart Disease
When a parent learns the news that their unborn or newborn baby has congenital heart disease (CHD), they're put into a position they were never expecting to be in. In general, being a parent comes with a lot of emotions, and if your child has a heart condition, these emotions can be amplified. Anthony and Lacy are the parents of a six-year-old named Josiah who was prenatally diagnosed with hypoplastic left heart syndrome. In this post, they share their wisdom and experience of parenting a child with CHD. Before Your Child is Born Ask questions. If you find out about your child’s heart condition prenatally, it’s essential to have a clear understanding of their exact medical condition. Be sure to ask your cardiologist as many questions as you can to get an all-around understanding of it. “There’s no such thing as a bad question,” says Lacy. Understand the financial component. The unfortunate truth about CHD is the surgical and medical costs can be extremely expensive, even in you have health insurance. Make sure you have an understanding of your health insurance coverage and the financial assistance policy your hospital can offer. Prepare your other children. If you have other children,…
Why Ella is So Blessed
Ella is an extremely blessed person. Not only was she gifted with a beautiful voice and songwriting talents, but she also survived a cardiac arrest at the age of 14. As she was entering a basketball game during a tournament, she dropped to the ground and went into cardiac arrest for seven minutes. An automated external defibrillator (AED) that was on site at the gym was crucial in saving her life. “I completely blacked out, and after someone performed CPR and used the defibrillator on me, I was rushed to the hospital. I stayed there for a week while doctors ran every single test they could to figure out what went wrong,” says Ella. Doctors concluded that “an electrical short circuit” happened in her heart, but never found the reason why it happened to this healthy teenager. While doctors hoped nothing like this would happen again, they decided it would be best for Ella to receive an implantable cardioverter-defibrillator (ICD) in case it did. “I was told that when something like this happens to a person, they’re usually don’t come back as the same person or live through it,” says Ella. “Because of that, I’m happy I have this defibrillator…
Pediatric Dentistry and CHD: What You Need to Know
When a child takes proper responsibility of their oral hygiene, they will reduce their risk for infection, prevent cavities, and establish a routine early in life that will set the foundation for the development of healthy, strong teeth. Dental care is extremely important for all stages of life, especially for children with congenital heart disease (CHD). If your child has a heart condition, Pediatric Dental Hygienists Anna Sidel and Tiffany Yater have some important tips you need to know when it comes to pediatric dentistry. What is Infective Endocarditis? One of the most significant risks that children with CHD need to look out for when it comes to dentistry is infective endocarditis. Infective endocarditis is an infection in the heart valves or the inner lining caused by bacteria entering the bloodstream. While infective carditis is not common, it can be a severe infection if contracted. The American Heart Association (AHA) has guidelines that state only children with high-risk heart disease require antibiotics prior to dental treatment. This includes patients who have: Artificial heart valve Endocarditis in the past Certain congenital heart diseases Heart transplant with heart valve disease If a child does need an antibiotic before a dental visit, they…
Miranda: The Miracle Baby
Lorena, a Venezuelan native who is the proud mother of three-year-old Miranda, suffered four miscarriages before becoming a mother due to a blood clot disorder. When she finally became pregnant with Miranda, her excitement was paused at her 20-week appointment at her perinatologist’s office. It was at this appointment where she learned that something was wrong with Miranda’s heart. “They couldn’t tell us what specifically was wrong, but that it was serious,” says Lorena. “After everything we had been through, it was devastating to hear this news.” Lorena and her husband Daniel were then referred to Sibley Heart Center Cardiology to get an echocardiogram (echo) of Miranda’s heart. At this appointment, doctors confirmed that Miranda has hypoplastic right heart syndrome (tricuspid atresia), transposition of the great arteries (D-TGA) and a ventricular septal defect. This complex diagnosis led to close monitoring of Miranda for the rest of the pregnancy and prepared her for the surgeries she would need. When Miranda was born January 18, 2016, she only weighed five pounds, five ounces at 40 weeks. She was immediately taken to the intensive care unit and stayed there for her first 18 days. She was only home for a few days before…
Miranda: The Miracle Baby – Spanish Version
Lorena, nativa de Venezuela y la orgullosa mamá de Miranda de tres años, sufrió cuatro abortos espontáneos antes de ser madre debido a un trastorno en la sangre. Finalmente quedó embarazada de Miranda, y su emoción se detuvo durante su cita a las 20 semanas en el consultorio de su perinatólogo. Fue en esta cita donde se enteró de que algo estaba mal con el corazón de Miranda: "no pudieron decirnos cuál era específicamente el problema, pero sí nos dijeron que era grave", dice Lorena. "Después de todo lo que habíamos pasado, fue devastador escuchar esa noticia". Lorena y su esposo Daniel fueron remitidos a Sibley Heart Center Cardiology, donde le harían un ecocardiograma (eco) del corazón a Miranda. En esta cita, los médicos confirmaron que Miranda tenía síndrome del corazón derecho hipoplásico faltandole la válvula tricúspide (también conocida como atresia tricuspídea), con transposición de las arterias principales (D-TGA) y defecto septal ventricular. Este complejo diagnóstico los llevó a una estrecha vigilancia de Miranda durante el resto del embarazo y la preparó para las cirugías que necesitaría al nacer. Cuando Miranda nació el 18 de enero de 2016, tan solo pesaba cinco libras y cinco onzas. Fue llevada inmediatamente a…
Your Top 8 Heart Questions Answered!
By: Dennis Kim, MD, PhD *Director, Pediatric Cardiac Catheterization Laboratories, Children’s Healthcare of Atlanta/Sibley Heart Center Cardiology* All Ages *February is American Heart Month, so one of our pediatric heart healthexperts, Dennis Kim, MD, PhD, is answering questions about kids’ heart health here at the Healthy Dose blog! A father to five daughters, Dr. Kim understands the challenges of raising a healthy family in our busy world. Dr. Kim is the director of the Pediatric Cardiac Catheterization Laboratories at Children’s Healthcare of Atlanta/Sibley Heart Center Cardiology, where he diagnoses and treats kids and adults with congenital heart disease using catheter-based methods. Dr. Kim started his medical career in general pediatrics and pediatric cardiology. He’s also the editor-in-chief for SecondsCount.org, a website dedicated to patient education for cardiac issues. Dr. Kim answered some of our top questions about heart health and has some great tips for building healthy heart habits for life!* Q: Do parents need to be concerned about kids’ heart health? A: It’s easy to think children don’t need to worry about heart-related issues like hypertension, cholesterol and cardiac disease. And while it’s true the risk factors for these problems increase as you get older, very often it’s the…
Heart Murmurs in Children: What You Need to Know
Heart murmurs in children are one of the four primary reasons why a new patient would be referred to Sibley Heart Center Cardiology’s outpatient office (the other three symptoms are chest pain, passing out (syncope) and irregular heartbeat). Many people have a different definition of a heart murmur than cardiologists, and pediatric cardiologist Robert Campbell, M.D. shares his insight into what a heart murmur is and is not. Heart Murmur in Children Definition At its simplest terms, a heart murmur is the noise of turbulent blood flow. “Think about a river. A smooth stream makes close to no noise, but a waterfall over rocks makes a lot of noise because it’s a turbulent area for water,” explains Dr. Campbell. It’s also important to understand that the heart murmur itself is not the cause of a heart condition. Heart murmur and heart disease are two different things, and if you have a family member who suffered from a heart condition, it’s easy to link these two together,” Dr. Campbell says. “A murmur may be present because of a heart condition, but it’s not definite. When your child comes to me for heart murmur evaluation, I want to answer one question: what’s…
Nathan: The Warrior for Kids with Heart Conditions
Nathan has big dreams in his sight; he wants to be on the television show American Ninja Warrior Junior. His reasons for being on the show are unique to other contestants, as he wants to represent kids like him. “I want to be on American Ninja Warrior because I want to stand up for kids with heart conditions. I want to encourage them that they can do anything they want to.” Unlike other children who have been diagnosed with heart conditions prenatally or days after they were born, Nathan was diagnosed with an absent left pulmonary artery at the age of six. In March 2017, his mother Jennifer took him to the doctor when he was sick with the flu. His doctor listened to his heart and heard a heart murmur. They were immediately sent to Sibley heart Center Cardiology for an EKG and ultrasound, and shortly after they received the diagnosis. “We saw Dr. Heaton soon after his diagnosis. She is the one who believed she could place a stent through the cath lab. He needed the stent to open up his left pulmonary artery (which was about a fourth of the size it should be at that time),”…
When is Child Chest Pain Cardiac Related?
When a child complains about chest pain, it can be associated with serious health problems. While it’s not common, chest pain in children can be linked to cardiac-related issues, and it’s important to understand when you need to see a cardiologist due to this pain. Brandon Harden, M.D., a pediatric cardiologist at Sibley Heart Center Cardiology, shines a light on when your child’s chest pain could be cardiac related. How Common is Cardiac-Related Chest Pain Chest pain is a very common complaint in children and adolescents. However, whether your child has a heart condition or not, chest pain is rarely cardiac related. “Although we see a lot of patients who come in with chest pain, it’s not associated with the heart 99% of the time,” says Dr. Harden. If a child’s chest pain is linked to a cardiac issue, the chest pain typically needs to be related to exercise or exertion. ”Unless your child is pushing their physical limits and starts feeling chest pain during strenuous physical activity, it’s not a concern that these cardiac-related issues caused the pain.” A study was conducted at Children's Healthcare of Atlanta (CHOA) in 2014 that evaluated approximately 4,000 pediatric patients that presented…
How Iris Steals Everyone’s Heart
Iris, an almost two-year-old girl who was diagnosed with a complete atrioventricular canal defect (CAVA) and atrial septal defect (ASD) of the secundum, has been described by her parents as “a music lover and someone who always has everyone’s attention.” While she constantly brings a smile to her parents Lauren and Ryan’s faces, her journey to where she is today has been a long and hard process. Lauren was six weeks pregnant with Iris when blood test results show she was flagged with Trisomy 21, also known as Down syndrome. These babes are more prone to have heart conditions, and Lauren and Ryan were sent to Sibley Heart Center Cardiology to learn more. “We met with Dr. Videlefsky and he thoroughly explained all the possibilities that came come with Trisomy 21 and anything we needed to prepare for,” says Lauren. “He explained it simply and not in medical terms that went over our heads, and he understood the emotional side of the possibilities.” After Lauren’s first fetal echocardiogram (echo), Dr. Videlefsky discovered Iris had multiple heart conditions. He drew Ryan and her a picture to better understand what’s going on with Iris’s heart and what to expect. Lauren and Ryan…
Advice and Lifelong Considerations for Parents of Children with CHD
When a child is diagnosed with congenital heart disease, there are a lot of lifelong considerations parents need to take into account. Tim Watson, M.D., a pediatric cardiologist at Sibley Heart Center Cardiology, has learned firsthand what kinds of things parents need to consider with their child, both now and in the future, and shares his knowledge in this post. Not All Physicians Have the Same Specialities While all pediatric cardiologists study and treat heart diseases and heart abnormalities, some physicians can have extra training in subspecialties of cardiology. Some of these include echocardiology (the study of complex heart ultrasound interpretation), electrophysiology (the study of heart rhythm abnormalities), cardiac catheterization (interventional procedures), adult congenital (take over care after children with heart disease become adults), and more. “With this diversity of subspecialties, it’s important to know that your child may need to work with other physicians to get a full-rounded understanding of their condition,” says Dr. Watson. “The physician a patient has seen for the last ten years may do one thing, but other physicians will perform other tasks within their subspecialty.” How Your Child Can Prepare for The Visits When you go into a clinic to meet with your child’s…
Charlotte, Jack and CHD
Today, Sarah shares the story of her two children with CHD. First, daughter Charlotte was diagnosed, then son Jack. After a quick labor and a normal pregnancy, just like my first, we met our beautiful daughter Charlotte and looked on in awe as her APGAR test was performed. But I vividly remember watching my husband Thomas, standing over Charlotte, grow increasingly concerned as the doctor’s assessed her condition. Charlotte was blue at birth, and despite seemingly normal breathing, she continued to get bluer. The nurses brought Charlotte over to me and told me to hold her for a minute before she was rushed to the NICU. I’ll never forget trying to take in the curves of her face, her smell, how she felt in my arms – before they took her away. Several terrifying hours passed without any answers or improvement. Her oxygen levels continued to drop. Finally, eight hours after Charlotte was born, Dr. James Sutherland from Sibley came into our room and told us that our daughter had Pulmonary Atresia, a congenital heart defect. With her completely obstructed pulmonary valve, her heart couldn’t pump blood to her lungs. Dr. Sutherland patiently and compassionately explained that she would first…
What to Do if Your Baby Has a Heart Defect
When you find out your child has a heart defect, you may feel overwhelmed with emotions and lost on what next steps you need to take. Dr. Divya Suthar, a pediatric cardiologist at Sibley Heart Center Cardiology, has this key advice for any parent who just learned their child has a heart defect. Don’t Panic The news about your child’s heart condition may come as a surprise, but the first thing to understand is not to feel overwhelmed. “As doctors, the first step we will take is to explain what your baby’s heart condition is and what that means going forward,” says Dr. Suthar. “Whether those next steps are surgery, taking medications, or monitoring at routine visits with a cardiologist, we will have a clear plan outlined for your family.” If you do find out your baby has a heart condition when you are pregnant, the advice is still the same. “Don't blame yourself for his/her condition. There’s a one percent chance of heart defects in newborns, and it’s not because of anything you did. We can take this as an opportunity to prepare before your baby is born, and together we can determine what next steps we need to…
He is the Light in our Life – Axel’s Story
Axel, born on August 10, 2017, is described by his mom Tara as a peaceful child. The name Axel actually means “Father of Peace,” and she says he has lived up to his name. This characteristic is considered a blessing by Tara since he was born with coarctation of the aorta (narrowing in the aortic arch of the heart), bicuspid valve and ventricular septal defect (VSD), which has closed. Three days after Axel was born, he was about to be released from the hospital to go home when a nurse noticed how heavy he was breathing and limp his arms were when she picked him up. The nurse immediately ran a few tests on the baby, which put Tara on edge. “The nurse came back by herself and asked how I was doing. I knew at that moment that something was wrong,” says Tara. While the news was shocking, it wasn’t the first time she heard that Axel could have a heart problem. At Tara’s 25th-week checkup, they heard a heart murmur when listening to Axel’s heart. She was then sent to a prenatal specialist for further examination that morning. After taking echocardiograms (echoes) of Axel’s heart, the doctor concluded…
What is the Difference Between Congenital and Acquired Heart Defects?
Not all heart diseases are the same, and there are some vast differences between congenital heart defects and acquired heart defects. Discover what you need to know about these different heart defects. Main Differences Between Congenital and Acquired Heart Defects Congenital heart defects are present at birth. This defect comes from an abnormality in the development of the heart in the embryogenesis stage. There are a lot of steps the body takes when forming the heart into an organ, and if the slightest detail goes wrong, it can result in a congenital heart defect. No two cases of congenital heart defects are identical, and there are specific genetic syndromes with higher chances of having a defect, such as Trisomy 21. Acquired heart defects are something a person would acquire over time. In other words, these problems develop after a baby is born, rather than during embryogenesis. These are defects that most people think of when they imagine “having heart problems,” and are more commonly seen in older adults. Heart attacks, angina, and excessive calcium build-up on the heart valves are the most common types of adult acquired heart disease. Acquired heart disease is generally rare in children because it takes…
Exercise Restrictions for Children with Heart Conditions
Many children with heart conditions go on to lead healthy lives, but living with these conditions can also come with restrictions on the length and types of exercising they can perform. If your child has a heart condition, here is what you need to know about their exercise restrictions. How Strict are the Exercise Restriction Guidelines Pediatric cardiologists are required to share the exercising guidelines that parents and patients need to know. However, these guidelines don’t have concrete statistics to support them and will be more applicable to certain conditions than others. In many doctor’s eyes, the guidelines are just that, and they shouldn’t be considered as strict rules. Your family should pursue a shared decision discussion with your child’s physician about how strictly or loosely your child needs to follow these. You should also discuss the risks of not being active and should all make a collective decision together about what’s best for your child’s condition. When Should Your Child Exercise Caution When a patient is engaging in physical activity, they need to be self-aware and watch out for the following symptoms: Skipped heartbeats Chest pain Feeling winded If they do start to feel any of these symptoms, they…
A Sweet Girl with a Lot of Love in Her Heart
Natalia is just like any other one-year-old girl. She’s a sweet, loving baby and a Daddy’s girl who sees him as her everything. She’s also described as a hyper, energetic baby, and many people wouldn’t be able to tell after meeting her that she has been in and out of the hospital her whole life. On January 21, 2017, the day she was born, Natalia’s parents were told she had a congenital heart condition called hypoplastic left heart syndrome (HLHS), where the blood flow through the heart is weak due to the left side of heart not fully developing while in the womb. She was also diagnosed with aortic valve atresia and ventricular septal defect, which are linked to her HLHS. Natalia was immediately transferred to Children’s Healthcare of Atlanta, where doctors performed the Norwood procedure. This surgery’s purpose is to rebuild the heart, so the right side of the heart becomes the main pumping chamber to get blood to the lungs and rest of the body. After two weeks of recovery in the hospital, Natalia was sent home to fully recover. Six months later, she returned to the hospital to have the follow-up Rastelli surgery and coarctation repair. Following…
The Importance of Pulse Ox Screening
Newborn screening for critical congenital heart disease using pulse oximetry screening (also called pulse ox screening) has become one of the most vital screenings a baby can receive. This simple screening measures a newborn’s oxygen levels in their blood and helps determine if the newborn has any serious heart defects or diseases. Why Pulse Ox Screening is Important Many children are born with critical congenital heart disease, which is defined as a heart disease that requires intervention (whether surgery or cardiac catheterization) in the first few months of life. While many cases can be detected prenatally or through symptoms not long after birth, many children who had heart conditions have been sent home undiagnosed in the past. When babies are sent home without being correctly diagnosed with congenital heart defects, they could become extremely sick or even die. This is because there are a lot of changes that can happen in the heart within the first few weeks of life. Thanks to pulse ox screening, all newborns can have their oxygen levels evaluated and appropriately treated before they leave the hospital. While the importance of pulse ox screening cannot be denied, it wasn’t until 2011 when it was added to…
Long View After Congenital Heart Surgery
Congenital heart surgery can be a very daunting operation for any child or parent to experience, and the road to recovery has different phases that will vary for each patient. In this post, we hope to shed some light on what to expect after your child goes through congenital heart surgery. Immediately After Surgery Once the procedure has been completed, your child will go straight to the Intensive Care Unit (ICU) and be observed by a specialized team and advanced monitoring equipment. The most critical phase after surgery is monitoring your child after the cardiac intervention, as there could be a lot of risks with other organs depending on the severity of their operation. The amount of time a patient recovers in the hospital is entirely situational and depends on the particular lesion and procedure. It can go from a few days or less than a week to up to several weeks or months. Going Home After Surgery When your child leaves the hospital after their surgery, depending on their personal experience with the operation, they will probably go back for a follow-up appointment after they go home. Doctors typically like to see patients one to two weeks after congenital…
Preparing for Child’s First Visit at Sibley Heart Center Cardiology
If you’re planning your child’s first appointment to Sibley Heart Center Cardiology, there is some necessary information you need to know to prepare them for this visit. How to Best Prepare Your Child No matter your child’s reason for an appointment, here are the basic things you need to know before arriving at Sibley Heart Center Cardiology: Bring the names and addresses of all your child’s doctors to the appointment. Arrive at least 15 minutes before your child’s appointment to complete first-time visit paperwork. Remember to bring your child’s insurance card, medical referral form, and insurance referral form. To diagnose your child’s heart problems correctly, our staff will ask for your child’s medical history. Please bring any medical records or prior test results that will be helpful for this appointment. Bring your child’s medicines, including vitamins and herbal medicines, or a copy of the prescription and any necessary medical records. Do not use lotions, oils or powders on your child’s skin before the appointment. Talk to your child about the appointment and why they are coming to Sibley Heart Center Cardiology. If they have any questions, our staff will do their best to address the child first at their appointment.…
From Patient to Dreaming of Medical School
Cain, like many other 16-year-olds, enjoys playing sports, specifically soccer and basketball. What makes him unique is he has been diagnosed with nonrheumatic aortic stenosis, aortic root dilation, and right ventricle to pulmonary artery (RV-PA) conduit obstruction. As you can imagine, these heart conditions keep him on the sidelines more than on the playing field. “Throughout most of my early childhood, I wasn’t aware of my severity of heart problems,” says Cain. “I didn’t realize the parameters that were set on my life until I got to an older age. I can’t play competitive sports, and I can’t do everything my peers can like run or lift weights. Those are things I still struggle with, but it doesn’t hurt me; it’s just different.” When Cain was just two weeks old, his mother Nicole took him in for his scheduled wellness checkup and discovered he had a heart murmur. When Nicole was referred to a cardiologist at Sibley Heart Center Cardiology and agreed to make an appointment for Cain, the doctor urgently replied, “No, I already made an appointment for Cain. You need to go now.” It was at this impromptu appointment where Cain received his diagnosis later that day. “Later…
Finishing the Race: Carly’s Story
"Sibley is a very special place to me and I am thrilled to have been able to contribute to their amazing team."
Hampton – Hope and Will’s Number One Fan
It felt like our world was being turned upside down.
Sara’s Story – My Child Has a CHD
Stay focused on what you can control as opposed to what you can’t
My Child Has CHD – What Happens Now?
For symptoms of CHD in babies, children and teens, Click Here. So you’ve learned that your child has a congenital heart defect (CHD). Their diagnosis might feel overwhelming. You might feel like the world has gone sideways. “My first reaction was to pick my baby up and run out the door; somehow thinking that that would save her life. The feeling was indescribable.” At Sibley, it is our privilege to mend and manage hearts so our CHD patients and their families can get back to living lives simply and to the fullest. If you’re just starting your heart journey, here are the basics of what to expect. Diagnosis “A doctor I didn’t know, with ‘Pediatric Cardiologist’ stitched on his white coat, was at the door. In that moment, I knew our entire world was about to be flipped upside down.” CHD is not diagnosed with a single test. Your doctor will use some combination of family history, risk factors for CHD, a physical exam. Testing may also involve performing an EKG and/or echocardiogram (aka “echo”, which is an ultrasound of the heart). Once you have a diagnosis for your child, here are some basic Do’s and Don’ts that may help…
Symptoms of CHD in babies, toddlers, preteens and teens
CHD is has a variety of symptoms and not every child presenting with these symptoms has heart problems. (Some kids are just sweaty sleepers, for example.) Symptoms of CHD in kids may appear quickly after birth, but may not show up until your child is a toddler, a teen or a young adult. Babies Persistent fast breathing Heavy breathing, also known as retractions (skin pulling in under rib cage or under neck) Long feeding time, refusal to eat Low energy/activity level Poor weight gain Gums and tongue turning blue, or a blue/grey tinge to the skin Toddlers and Young Children Poor energy level, tiring easily Gums and tongue turning blue, or a blue tinge to the skin Poor growth Chest pain Rapid heartbeat or breathing Passing out Losing their breath during activities sooner than their peers Preteens/Teens Problems with growth/development Fainting/passing out Gums and tongue turning blue, or a blue tinge to the skin Chest pain, especially with exercise Rapid heartbeat or breathing Losing their breath during activities sooner than their peers Palpitations, or hearts beating abnormally or skipping a beat Dizziness with exercise This is not a comprehensive list of all signs and symptoms. Please contact your child’s doctor, if you child experiences…
Unpredictable Blessings
"I'm sorry, but there is something wrong with your baby's heart," were the words we heard when I was 28 weeks pregnant with our baby, Madden. After trying so hard to get pregnant and to start our family, it was difficult to hear. We were angry, frustrated and sad. We were also confused and didn’t know what having a baby with congenital heart defects would entail. When Madden was born in March 2017, our new reality began. This was no longer a story we were being told about a baby we hadn't met, it was our son’s heart journey. The first thing we learned along the way was that anything can change at any time with a CHD baby. The day after he was born, Madden was transferred to CHOA. His CHD diagnosis changed significantly upon his arrival. We learned that Madden has Tetralogy of Fallot with presence of MAPCAS (major aortopulmonary collateral arteries). This includes a hole in the heart (VSD) and Pulmonary Atresia. At first, we were told that Madden would need an operation very soon and that he would not survive without IVs to provide medications until then. His open heart surgery was scheduled for when he…
Meet Laura
Sibley is known for our incredible nurses and doctors, but what most parents don’t realize is that we also have a team of specialists who also help to mend and manage children’s health. March is National Nutrition Month, so we’re highlighting our own Sibley Nutritionist, Laura Hamilton. What do you do here at Sibley? I am the only Dietitian for the entire Sibley practice so I work on any and all aspects of Nutrition when it comes to our Cardiac Patients. Starting with our more fragile patients <1yr who need help with feedings, (formula/breastfeeding) and/or overall nutrition management before or after surgery. I make sure they are meeting their nutritional needs for appropriate growth. I am also on the Preventive Cardiology team, where I meet with patients >3yrs and their families to help them get a better understanding of how their diet and food choices are affecting their health, both positively and negatively. We focus mainly on patients who have elevated Cholesterol and/or elevated blood pressure. I then work with the parents, and their children to create a better eating plan that works for them. What’s the best part of your work? I really enjoy talking to families who have…
New Depths of Exhaustion… And Immeasurable Joy for Ava and Her Heart Mama
Today, our daughter Ava is a healthy, spunky, medication free, wild and talkative three and a half year old. But where we are today wasn’t certain when I was pregnant with Ava. I was told at my 20-week scan that they wanted me back in 5 weeks because there were some things they couldn’t see. I thought nothing of it. At that 25-week follow up, we learned something was not right and were immediately sent to Atlanta Perinatal Consultants. After two not quite right diagnoses, we were sent to Sibley. My husband Chandler and I felt desperate for knowledge, for answers, for hope. It was at Sibley that we finally were given some answers – Ava was diagnosed with Shone’ Syndrome – and a surgical plan. We got to tour the CICU at Children’s Healthcare of Atlanta at Egleston, which gave us a little glimpse into our future. When I delivered Ava, Sibley doctors came straight to Ava’s NICU. They performed some tests and talked to us. Sibley was always on top of things, which gave me a sense of security. At 6 days old, Ava underwent open heart surgery to repair her coarctation and close one of her VSDs. Over…
Heart Warrior Halle
The best advice I can give to families that find themselves on this journey is two-part. First, find someone who has walked this road ahead of you. Second, take one day at a time.
Faith and a Tiny Red Shirt
That is exactly why you are getting this shirt. Every time you lose faith, you will grab this shirt, look at it, and convince yourself he will wear it. Our son Arturo was born at night, welcomed by two very excited parents and one very happy, four-year old big sister. We thought he was perfectly healthy, but the morning after Arturo was born our pediatrician heard a murmur in his heart. A pediatric cardiologist found what was really wrong: Arturo had Pulmonary Atresia with an underdeveloped right ventricle. An ambulance was preparing to transport him to another hospital with a NICU that could perform a diagnostic catheterism that same afternoon. Even coming from the medical field, surrounded by a loving family and a group of friends, we felt lost. My knowledge of CHD came from books, not personal experience. We could not understand what we had done wrong. We couldn’t imagine how to explain to our little girl, so eager to meet her brother, that he had a serious heart problem. Arturo underwent his Glen shunt surgery on the second day of his life in Mexico, and the 2 stages of the Fontan procedure in Delaware at 6 months and…
A Stronger, Healthier, Happier Heart Hero!
He truly is our Heart Hero! These days, Easton’s ‘zipper’ is the only outward sign of his CHD.
Hugs, Kisses, Smiles and a Successful Surgery!
Natalie’s heart may have a scar, but she is full of love and spreads that love to everyone she meets.
A Promposal to Remember
A friend told my dad, “A lifetime on Coumadin is still a lifetime.” Those wise words help remind me how blessed I am.
It’s About What I Can Do, Not What I Can’t
“We were lucky in the sense that we knew to be looking for signs and symptoms as Rolfe’s father had Marfan Syndrome,” says Tasha. “Getting Rolfe’s diagnosis was pretty simple, as he had physical symptoms that made diagnosis easier to make so early. Not everyone with Marfan is tall and thin, but Rolfe was 23 ¾ inches at birth and weighed 10 pounds.” “At first, it was really overwhelming. I wondered, ‘How will I ever learn everything about his condition? What will his future look like?’ I had an almost grieving period for what I had envisioned life would be like,” says Tasha. “But I also had determination and a feeling of empowerment. Another Marfan Mom told me to relax. She told me that I would become an expert in my child’s condition, often times educating doctors on this uncommon condition. That said, I haven’t had to educate Dr. Sallee – he’s amazingly informed!” A Family’s New Normal “Rolfe has had 4 surgeries so far,” says Tasha. “A left lens removal, left lens muscle correction, an aortic root replacement (valve sparring, David’s procedure) and a modified Ravitch for pectus carinatum.” “I remember that when I was little and wanted to…
Faith and a Little Girl’s Instincts
When my daughter Mauri fainted at school, I knew that something was wrong. Being diagnosed with a heart murmur at the age of 3, Mauri has always been one to know her limitations and on this particular day, she fell out from simply walking to her class. When the nurse called, I asked to speak to Mauri and she said very clearly, “My heart hurts”. I knew at that time, that she knew what she was talking about and getting her to the doctor was our first priority. I picked Mauri up from school and took her straight to the emergency room, where my husband met us. After an extensive evaluation by Dr. Toole in Albany, Georgia, Mauri was diagnosed with aorta stenosis (an enlarged heart.) His exact words were, “Mauri was a ticking time bomb and needs to be airlifted to Children’s Healthcare of Atlanta at Egleston, for emergency surgery.” My first reaction was to pick my baby up and run out the door; somehow thinking that would save her life. The feeling was indescribable. Mauri’s diagnosis and surgery happened in a whirlwind. While it was her heart that needed surgery, mine ached. I remember feeling that my heart…
9 Noticeable Signs of Possible Marfan Syndrome
Marfan syndrome is a life-threatening genetic disorder, and an early, accurate diagnosis is essential, not only for people with Marfan syndrome, but also for those with related disorders. Knowing the signs of these conditions can save lives 9 Noticeable Signs of Possible Marfan Syndrome: Long arms, legs and fingers Tall, thin body type Curved spine (scoliosis) Chest sinks in or sticks out Flexible joints Flat feet Crowded teeth High, arched palate Stretch marks on the skin that are not related to weight gain or loss Less visible signs of possible Marfan syndrome: Heart problems, especially those related to the aorta Sudden lung collapse (pneumothorax) Eye problems, including severe nearsightedness, dislocated lens, detached retina, early glaucoma, and early cataracts This is not a comprehensive list of all signs and symptoms. Please contact your child’s doctor, if you child experiences any symptoms that concern you. The Marfan Foundation #KnowFightWin
Ten Ways to Raise Awareness for CHD
February is CHD Awareness Month. This month really does matter to CHD patients and families – despite the fact that 1 in 100 kids are born with a congenital heart defect, awareness in the general population is fairly low. Sibley, and the Heart families we serve, want to change that! Know the Facts: Understand the facts of congenital heart defects and share them with others. Visit Children’s Healthcare of Atlanta, CDC, Children’s Heart Foundation and the American Heart Association websites for information. Community Involvement: Participate in the Congenital Heart Walk in your area or other events that promote and raise money for CHD research and family support. Participate in Your Local CHD Proclamation: Many groups ask their governor, mayor or local officials to sign a proclamation, declaring CHD Awareness Week in February. The best way to contact your local government is through their official web Petitions: Help get CHD Awareness Week recognized nationally in the United States by signing a petition. Social Media & Email: Use your family and friend networks to raise awareness and share information about CHD. Change your profile picture for the month of February, share CHD posts to your personal Facebook, Instagram page or other social…
Kate’s Heart Day: Celebrating New Beginnings, 6 Years Running
Each year on the anniversary of their daughter Kate’s open heart surgery, the Daniel family takes a day to celebrate and reflect on the success of the repair and the new beginning it created for Kate’s life. In January of this year, they celebrated Kate’s 6th Heart Day!
Coltyn’s Story
Luci’s Mom Shares
It can be tough raising a Marfan child. I struggle with two voices: The one that wants to keep my child safe and the one I call my “You go, girl!” voice that wants her to define her own limits through experience.