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Georgia Heart Dad Launches Support Group to Help Families Like His

Just six weeks after Brantley and Briana’s gender reveal party, where they learned they’d be having a third son, they went in for a second ultrasound to look at the baby’s anatomy. Expecting no further surprises, they were unprepared to hear the news of what doctors saw. Their baby was diagnosed with Hypoplastic Left Heart Syndrome (HLHS), a complex and rare heart defect in which the left side of the heart is critically underdeveloped. “When you’re diagnosed with something like that, the access to information these days is both a blessing and curse,” Brantley said. “We were told, ‘Do not Google this. Do not get on the internet because it’s just going to scare you.’ Of course, the first thing my wife did when we got in the car was look up HLHS.” Brantley said the next 20 weeks until Isaac’s birth was “basically sheer terror” but the doctors and staff at Sibley did their best to prepare the couple for what was to come. They had time to research, ask questions and even changed Briana’s obstetrician so she could deliver closer to Egleston. The cardiologist was fantastic, and he told us what to expect,” Brantley said. “He assured us that, with today’s technology, they were…

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Not Just a Heart Patient: Paige’s Heart Transplant Journey

When Paige didn’t gain weight between her two- and four-month-old appointments, doctors began treating her for acid reflux. But when her gastroenterologist noticed that her breathing was distressed, he called for a chest X-ray. It showed something her parents never expected: a very enlarged heart, which led to a diagnosis of Dilated Cardiomyopathy. Their newborn baby was in heart failure. “We were in complete shock,” said mom Kellye. “After that day, we spent about six weeks in the hospital, trying to wean her from medications while maintaining her weight. It was scary. They told us that with her condition, a third of kids can take meds, a third can kind of hang out where they are and a third will not make it.” When the heart failure clinic at Egleston determined that Paige’s kidneys were failing at 8 months old, they said it was time to list her for a heart transplant. Although finding a match would be somewhat easier because she hadn’t had any surgeries yet and her enlarged heart had created ample room in her chest cavity, Kellye and her husband Nate were told they would likely have to wait for three to six months for a heart.…

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Children’s Pediatric Heart Transplant Program First and Only in Georgia

With an average of 16 heart transplants performed each year, the Children’s Healthcare of Atlanta Heart Transplant Program is part of an elite network of programs in the world that perform more than 10 transplants per year. It is the only pediatric heart transplant program in Georgia. The program began in 1988 and is now led by Kirk Kanter, MD, Surgical Director, and Chad Mao, MD, Medical Director. The Advanced Cardiac Therapies program, which includes Children's Heart Transplant team, cares for infants, children and young adults before, during and after pediatric heart transplantation. The Advanced Cardiac Therapies program also includes the Ventricular Assist Device (VAD) program, which uses surgically placed mechanical pumps to support heart function and blood flow in people with weakened hearts. There are two broad categories that can indicate the need for a transplant: cardiomyopathy, which consists of heart muscle disorders, and congenital heart disease (CHD), which features anatomical or structural abnormalities of the heart. Most cases will not be severe enough to require a transplant, but if a child’s condition is no longer amenable to surgeries or medication, he or she may be evaluated for placement on the heart transplant list. Patients are referred to our…

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Physicians with Heart

William Mahle, MD, Co-chief, Children’s Healthcare of Atlanta Heart Center, and CEO, Sibley Heart Center Cardiology As a pediatric cardiologist, William Mahle, MD, wants to be able to look himself in the eye each morning knowing that he can assure his patients’ parents that they cannot get better care for their children anyplace else. “If I can’t say that, I either need to change or refer them elsewhere,” Dr. Mahle said. “I must have the internal integrity to know, without hesitation, what I would say to a parent who asked if I would want my own kid to be cared for by this hospital and this doctor. The answer should always be yes.” Dr. Mahle joined the Children’s Healthcare of Atlanta Heart Center in 2001, where he is now Co-chief and CEO of Sibley Heart Center Cardiology. He has achieved national recognition for his leadership in pediatric cardiology and has published more than 150 research and review articles, four book chapters and is an accomplished national and international speaker. Dr. Mahle came from Philadelphia and says the unique culture at Sibley drew him to Atlanta. "I’m in a very fortunate position to have a job as a physician and particularly…

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Patient Returns to Sibley to Share a Big Heart with CHD Families

Former Sibley patient Matthew Gunther was diagnosed with Tetralogy of Fallot at birth, and he had four heart surgeries and three back surgeries in the years that followed. Now 31, he invests his time in supporting other kids and young adults with CHD and their families. Matthew’s mother, Donna, was a founding parent of Kids at Heart when he was a child. Matthew still attends every family dinner, and he loves the opportunity to talk to new CHD families. “It can be a really scary moment when kids get diagnosed,” Matthew said. “Families feel like they are entering a whole new world, and they can feel alone in it. But through Kids at Heart, I get the chance to talk to brand-new families and let them know there are tons of us out there. I’ve gotten to see kids grow up in the program and graduate from high school. I’m glad we have this program to connect us.” Matthew also has volunteered since 2008 with Camp Braveheart, which he attended as a camper beginning at the age of 7 when it was still just a weekend camp. Some of his first campers have returned to camp as counselors. I’ve met…

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What Procedures Take Place in the Cath Lab?

Nathan was diagnosed at age 6 with a left pulmonary artery that wasn’t connected properly. Doctors proposed placing a stent through the pediatric cardiac cath lab to open his left artery, which was about a fourth of the size it should have been. The hope was that by placing a stent and allowing blood to flow through, the artery would grow large enough for doctors to surgically connect his artery correctly in the future. The procedure was successful, saving Nathan from additional open heart surgery, and doctors reconstructed the pulmonary artery to connect successfully two years later. Dennis Kim, MD, PhD, is director of the Pediatric Cardiac Catheterization Laboratories at Children’s Healthcare of Atlanta Heart Center, where four cardiologists who specialize in catheter-based cardiac procedures diagnose and treat children with congenital heart disease. Children’s Heart Center has one of the busiest pediatric cath labs in the country, with the ability to provide the entire spectrum of therapeutic options. In addition, they are part of several device trials for new innovative devices coming onto the market. Cardiac catheterization is a procedure where a long thin tube called a catheter is inserted in an artery or vein in the patient´s groin, neck…

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Fetal Echo Reveals the Structure, Function of Baby’s Heart

Fetal echocardiography uses an ultrasound probe to generate sound-based images of a baby’s heart, allowing doctors to better view its structure and function before birth. The majority of Congenital Heart Defects (CHD) can be diagnosed with fetal echo, with some exceptions. Some problems, such as very small holes in the heart, are difficult to detect even with advanced equipment. The most common reason a pregnant woman visits Sibley Heart Center Cardiology for a fetal echo is upon referral from her obstetrician or perinatologist. They may detect something unusual on a routine ultrasound and suspect a problem with the heart,” said Erik Michelfelder, MD, Director of Fetal Cardiology at Children’s Healthcare of Atlanta Heart Center. “They will then send the mom to us to confirm their findings and make a detailed diagnosis.” Other maternal indications that can prompt a referral for a fetal echo include a family history of heart disease, especially if either mother, father or a prior child has a diagnosis of CHD. If the mother is on medication that has the potential to cause birth defects, or if she has certain autoimmune diseases or diabetes, a fetal echo may be performed. Sibley cardiologists are also asked to evaluate…

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Former Patient Returns to Sibley to Launch Career

At 16, Chelsea Parsons experienced an episode at a cross country meet in which her heart rate climbed to an alarming 200 beats per minute. Paramedics were able to bring it down, but she was referred to Sibley Heart Center Cardiology in Alpharetta for further cardiac evaluation. She was diagnosed with atrioventricular nodal reentry tachycardia (AVNRT), the most common type of supraventricular tachycardia. AVNRT tends to occur more often in young women, and episodes often start and end suddenly. It occurs because of a reentrant electrical circuit located in or near the AV node that causes the heart to beat prematurely. The AV node is important in regulating the passage of electrical impulses from the upper (atria) to the lower (ventricles) chambers of the heart. “We spent a couple of months of trying to work out how aggressive it was, if it was common and whether I could take medication for it or just deal with it,” Chelsea said. “After having a few more episodes, we decided for ablation.” While she was nervous about going under anesthesia for the first time, Chelsea said the team at Sibley made her and her parents feel comfortable, and the ablation was a total…

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Kids at Heart Connects Families with Others Who “Get It”

In the mid-1990s, a small group of "heart parents" seeking community with one another started a potluck dinner in the Egleston Hospital conference room. What began as a simple desire to get to know other families walking the same congenital heart disease (CHD) path has grown into a program called Kids at Heart, which now serves about 2,000 families. The program is run by two staff coordinators, Kati Keyes and Alison Mueller. As a parent, I enjoyed seeing SO many other heart families and feeling like we were where we belonged. That there were people who KNEW what we were going through.”     Kids at Heart, which is 100 percent donor funded, administers an active Facebook group of 1,000 parents and hosts many events throughout the year designed to connect young heart patients and their families to each other. Every event is free to CHD families, who are often facing heavy financial burdens associated with their child’s care. “Everybody has so much that they juggle. Our families tell us that they might never be able to spend a day as a family doing the some of the activities we plan for them and how much they value these moments of normalcy,”…

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Never Count Them Out: Heart Warrior Kid Shows Her Strength

Although Brandy Spradlin’s pregnancy was high risk and she had nearly 30 sonograms during the course of it, she and her husband had no idea that anything would be out of the ordinary when their daughter was born. The Sibley doctor who saw Charli Jane within hours of Brandy’s birth said five different things were going on with her heart, and she had a 99.9 percent chance of having the chromosomal abnormality, 22q Deletion Syndrome. She was life flighted to Egleston from Piedmont Fayette Hospital. “My youngest was 12 at the time,” Brandy said. “Our other three kids had never even been sick, beyond the occasional strep throat. We were taken by complete surprise.” Charli had her first heart surgery at just five days old and another at 7 months to treat her multiple diagnoses of Interrupted Aortic Arch + VSD, Subvalvular Aortic Stenosis, and Branch Pulmonary Artery Stenosis . Now 9, she will likely need more surgeries as she grows, but doctors say her current heart repairs may last until middle school. Brandy says that Charli’s pediatric cardiologist, Heather Phelps, MD, goes above and beyond for her family. Charli is comfortable at her cardiology appointments with Dr. Phelps, asking…

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Feed the Heart Allows Families to Focus on Caring for Their Children Instead of ‘What’s for Dinner?”

In 2015, Vicki Haug was a nurse at Children’s Healthcare of Atlanta. One of her cardiac patients belonged to a family of seven, who was traveling back and forth to Egleston from Augusta as their young daughter waited for a heart transplant in the hospital. Weeks had turned into months, and one evening, the family confided to her that they didn’t have anything for their dad to eat. Vicki’s sister was in treatment for cancer, and she knew well how expensive it was to eat at the hospital for days and weeks on end. Her heart went out to them. Vicki wrote a proposal for the Cardiac Family Advisory Council requesting that the group provide a snack cart once a day and dinner once a month for cardiac patient families. The Director of Cardiac Services encouraged her to “give it a shot,” and her supervisor, Becky Johnson, helped Vicki acquire a cart and find space at Egleston. With a generous initial donation from a Sibley cardiologist and the enthusiastic participation of cardiac families who were eager to help each other, Feed the Heart was born. “It costs about $20 a day for one parent to eat here,” Vicki said. “They…

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Understanding the Heart-Brain Connection Leads to Better Patient Care

While the heart-brain connection is not completely understood in medical circles, doctors do know that the connection exists. They develop at the same time in utero, and the heart provides critical blood flow to the brain. When the heart is compromised, it may be unable to adequately meet the blood flow demands of the brain, putting a child at risk for motor and language delays, learning difficulties, attention problems and social challenges. “Babies can be born with smaller brains or a neurological injury like stroke or cardiac arrest or any temporary stop blood flow to brain can cause developmental delays and challenges later in life,” said Nneka Morris Alexander, PhD, pediatric psychologist for cardiac services, Department of Neuropsychology. “In addition, kids who have surgery within their first few months of life may be at higher risk of having developmental delays.” Children’s Healthcare of Atlanta’s Cardiac Neurodevelopmental Program provides critical mental health support to cardiac patients and families, as these patients are typically hospitalized for long periods of time. Dr. Alexander oversees inpatient screening and treatment of medically related trauma and stress in patients and families. She also conducts outpatient screenings of developmental skills for infants and toddlers with congenital heart…

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Preventing Sudden Cardiac Death Requires a Two-Pronged Approach

In a nutshell, Sudden Cardiac Arrest (SCA) means a person ceases to have an effective heartbeat. While a heart attack is a “plumbing” problem more common to adults, an SCA in pediatric or young adult patients is more likely to be “electrical.” Most people don’t think of kids as having heart problems at all, but there is a long list of pediatric cardiac disorders that could lead to SCA. Most are very rare, and some are inherited. Once diagnosed, any of these cardiac conditions should be closely monitored to prevent SCA. "When a child has SCA, it’s common that people will describe the child as having been perfectly healthy,” said Robert Campbell, MD, pediatric cardiologist at Sibley Heat 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…

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Hypertension in Kids Often Treated by Lifestyle Changes

The Children’s Preventive Cardiology Program provides services for kids with conditions that put them at risk for early heart attack and stroke. When risk factors such as obesity, high cholesterol, diabetes and hypertension are properly treated, often with just a healthy diet and exercise, early cardiovascular disease may be prevented. One of the risk factors of early cardiovascular disease is hypertension or elevated blood pressure. Hypertension describes the force of the blood pushing against the artery walls. What is considered elevated blood pressure in children varies based on age and height. When a child reaches age 13, adult data is used, and blood pressures of 120/80 are considered elevated. “Hypertension in kids older than three frequently displays no signs or symptoms,” said Michelle Wallace, MD, pediatric cardiologist at Sibley Heart Center Cardiology. “Sometimes they can have frequent headaches or bloody noses. Some kids have white coat syndrome, where their blood pressure is only elevated in the doctor’s office.” While hypertension can be connected to conditions like obesity, kidney disease, an endocrine or heart problem, such as narrowing of the aorta, in most cases doctors don’t have a good cause for hypertension in children. Hypertension can cause increased thickness of the…

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