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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 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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

Myra was worried that Garrett would “be gone” from Xander, but we assured her that Garrett would always be with him.

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.”…

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…

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…

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…

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…

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,…

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…

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…

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…

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…

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,…

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…

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…

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…

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…

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 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 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 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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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.…

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…

"Sibley is a very special place to me and I am thrilled to have been able to contribute to their amazing team."

It felt like our world was being turned upside down.

Stay focused on what you can control as opposed to what you can’t

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…

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…

"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…

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 work on the Preventative Cardiology Team. I meet with patients 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. I then help parents, and older children, like teens, create a better plan for their eating.  I also work with our infants and help with their feeding struggles. What’s the best part of your work? I really enjoy talking to families who have convinced themselves that to improve their nutrition, they have to be perfect every day. They get overwhelmed by that idea. But I’m a nutritionist and even I’m not perfect every day! When I see people realize that they can find ways to fit good nutrition into their lives and that they don’t need to let perfect be the enemy of good, I get really excited. We can…

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…

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.

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…

He truly is our Heart Hero! These days, Easton’s ‘zipper’ is the only outward sign of his CHD.

Natalie’s heart may have a scar, but she is full of love and spreads that love to everyone she meets.

A friend told my dad, “A lifetime on Coumadin is still a lifetime.” Those wise words help remind me how blessed I am.

“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…

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…

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

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…

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!

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.