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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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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 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…

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…

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…

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…

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…

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…

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.”…

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,…

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) 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…

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…

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…

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…

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…

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…

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…

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.…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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.…

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…

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…

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…

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 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…

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…

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,”…

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…

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…

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…

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…

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…