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Advice and Lifelong Considerations for Parents of Children with CHD

When a child is diagnosed with congenital heart disease, there are a lot of lifelong considerations parents need to take into account. Tim Watson, M.D., a pediatric cardiologist at Sibley Heart Center Cardiology, has learned firsthand what kinds of things parents need to consider with their child, both now and in the future, and shares his knowledge in this post. Not All Physicians Have the Same Specialities While all pediatric cardiologists study and treat heart diseases and heart abnormalities, some physicians can have extra training in subspecialties of cardiology. Some of these include echocardiology (the study of complex heart ultrasound interpretation), electrophysiology (the study of heart rhythm abnormalities), cardiac catheterization (interventional procedures), adult congenital (take over care after children with heart disease become adults), and more. “With this diversity of subspecialties, it’s important to know that your child may need to work with other physicians to get a full-rounded understanding of their condition,” says Dr. Watson. “The physician a patient has seen for the last ten years may do one thing, but other physicians will perform other tasks within their subspecialty.” How Your Child Can Prepare for The Visits When you go into a clinic to meet with your child’s…

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Charlotte, Jack and CHD

Today, Sarah shares the story of her two children with CHD. First, daughter Charlotte was diagnosed, then son Jack. After a quick labor and a normal pregnancy, just like my first, we met our beautiful daughter Charlotte and looked on in awe as her APGAR test was performed. But I vividly remember watching my husband Thomas, standing over Charlotte, grow increasingly concerned as the doctor’s assessed her condition. Charlotte was blue at birth, and despite seemingly normal breathing, she continued to get bluer. The nurses brought Charlotte over to me and told me to hold her for a minute before she was rushed to the NICU. I’ll never forget trying to take in the curves of her face, her smell, how she felt in my arms – before they took her away. Several terrifying hours passed without any answers or improvement. Her oxygen levels continued to drop. Finally, eight hours after Charlotte was born, Dr. James Sutherland from Sibley came into our room and told us that our daughter had Pulmonary Atresia, a congenital heart defect. With her completely obstructed pulmonary valve, her heart couldn’t pump blood to her lungs. Dr. Sutherland patiently and compassionately explained that she would first…

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What to Do if Your Baby Has a Heart Defect

When you find out your child has a heart defect, you may feel overwhelmed with emotions and lost on what next steps you need to take. Dr. Divya Suthar, a pediatric cardiologist at Sibley Heart Center Cardiology, has this key advice for any parent who just learned their child has a heart defect. Don’t Panic The news about your child’s heart condition may come as a surprise, but the first thing to understand is not to feel overwhelmed. “As doctors, the first step we will take is to explain what your baby’s heart condition is and what that means going forward,” says Dr. Suthar. “Whether those next steps are surgery, taking medications, or monitoring at routine visits with a cardiologist, we will have a clear plan outlined for your family.” If you do find out your baby has a heart condition when you are pregnant, the advice is still the same. “Don't blame yourself for his/her condition. There’s a one percent chance of heart defects in newborns, and it’s not because of anything you did. We can take this as an opportunity to prepare before your baby is born, and together we can determine what next steps we need to…

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He is the Light in our Life – Axel’s Story

Axel, born on August 10, 2017, is described by his mom Tara as a peaceful child. The name Axel actually means “Father of Peace,” and she says he has lived up to his name. This characteristic is considered a blessing by Tara since he was born with coarctation of the aorta (narrowing in the aortic arch of the heart), bicuspid valve and ventricular septal defect (VSD), which has closed. Three days after Axel was born, he was about to be released from the hospital to go home when a nurse noticed how heavy he was breathing and limp his arms were when she picked him up. The nurse immediately ran a few tests on the baby, which put Tara on edge. “The nurse came back by herself and asked how I was doing. I knew at that moment that something was wrong,” says Tara. While the news was shocking, it wasn’t the first time she heard that Axel could have a heart problem. At Tara’s 25th-week checkup, they heard a heart murmur when listening to Axel’s heart. She was then sent to a prenatal specialist for further examination that morning. After taking echocardiograms (echoes) of Axel’s heart, the doctor concluded…

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What is the Difference Between Congenital and Acquired Heart Defects?

Not all heart diseases are the same, and there are some vast differences between congenital heart defects and acquired heart defects. Discover what you need to know about these different heart defects. Main Differences Between Congenital and Acquired Heart Defects Congenital heart defects are present at birth. This defect comes from an abnormality in the development of the heart in the embryogenesis stage. There are a lot of steps the body takes when forming the heart into an organ, and if the slightest detail goes wrong, it can result in a congenital heart defect. No two cases of congenital heart defects are identical, and there are specific genetic syndromes with higher chances of having a defect, such as Trisomy 21. Acquired heart defects are something a person would acquire over time. In other words, these problems develop after a baby is born, rather than during embryogenesis. These are defects that most people think of when they imagine “having heart problems,” and are more commonly seen in older adults. Heart attacks, angina, and excessive calcium build-up on the heart valves are the most common types of adult acquired heart disease. Acquired heart disease is generally rare in children because it takes…

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Exercise Restrictions for Children with Heart Conditions

Many children with heart conditions go on to lead healthy lives, but living with these conditions can also come with restrictions on the length and types of exercising they can perform. If your child has a heart condition, here is what you need to know about their exercise restrictions. How Strict are the Exercise Restriction Guidelines Pediatric cardiologists are required to share the exercising guidelines that parents and patients need to know. However, these guidelines don’t have concrete statistics to support them and will be more applicable to certain conditions than others. In many doctor’s eyes, the guidelines are just that, and they shouldn’t be considered as strict rules. Your family should pursue a shared decision discussion with your child’s physician about how strictly or loosely your child needs to follow these. You should also discuss the risks of not being active and should all make a collective decision together about what’s best for your child’s condition. When Should Your Child Exercise Caution When a patient is engaging in physical activity, they need to be self-aware and watch out for the following symptoms: Skipped heartbeats Chest pain Feeling winded If they do start to feel any of these symptoms, they…

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A Sweet Girl with a Lot of Love in Her Heart

Natalia is just like any other one-year-old girl. She’s a sweet, loving baby and a Daddy’s girl who sees him as her everything. She’s also described as a hyper, energetic baby, and many people wouldn’t be able to tell after meeting her that she has been in and out of the hospital her whole life. On January 21, 2017, the day she was born, Natalia’s parents were told she had a congenital heart condition called hypoplastic left heart syndrome (HLHS), where the blood flow through the heart is weak due to the left side of heart not fully developing while in the womb. She was also diagnosed with aortic valve atresia and ventricular septal defect, which are linked to her HLHS. Natalia was immediately transferred to Children’s Healthcare of Atlanta, where doctors performed the Norwood procedure. This surgery’s purpose is to rebuild the heart, so the right side of the heart becomes the main pumping chamber to get blood to the lungs and rest of the body. After two weeks of recovery in the hospital, Natalia was sent home to fully recover. Six months later, she returned to the hospital to have the follow-up Rastelli surgery and coarctation repair. Following…

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The Importance of Pulse Ox Screening

Newborn screening for critical congenital heart disease using pulse oximetry screening (also called pulse ox screening) has become one of the most vital screenings a baby can receive. This simple screening measures a newborn’s oxygen levels in their blood and helps determine if the newborn has any serious heart defects or diseases. Why Pulse Ox Screening is Important Many children are born with critical congenital heart disease, which is defined as a heart disease that requires intervention (whether surgery or cardiac catheterization) in the first few months of life. While many cases can be detected prenatally or through symptoms not long after birth, many children who had heart conditions have been sent home undiagnosed in the past. When babies are sent home without being correctly diagnosed with congenital heart defects, they could become extremely sick or even die. This is because there are a lot of changes that can happen in the heart within the first few weeks of life. Thanks to pulse ox screening, all newborns can have their oxygen levels evaluated and appropriately treated before they leave the hospital. While the importance of pulse ox screening cannot be denied, it wasn’t until 2011 when it was added to…

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Long View After Congenital Heart Surgery

Congenital heart surgery can be a very daunting operation for any child or parent to experience, and the road to recovery has different phases that will vary for each patient. In this post, we hope to shed some light on what to expect after your child goes through congenital heart surgery. Immediately After Surgery Once the procedure has been completed, your child will go straight to the Intensive Care Unit (ICU) and be observed by a specialized team and advanced monitoring equipment. The most critical phase after surgery is monitoring your child after the cardiac intervention, as there could be a lot of risks with other organs depending on the severity of their operation. The amount of time a patient recovers in the hospital is entirely situational and depends on the particular lesion and procedure. It can go from a few days or less than a week to up to several weeks or months. Going Home After Surgery When your child leaves the hospital after their surgery, depending on their personal experience with the operation, they will probably go back for a follow-up appointment after they go home. Doctors typically like to see patients one to two weeks after congenital…

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Preparing for Child’s First Visit at Sibley Heart Center Cardiology

If you’re planning your child’s first appointment to Sibley Heart Center Cardiology, there is some necessary information you need to know to prepare them for this visit. How to Best Prepare Your Child No matter your child’s reason for an appointment, here are the basic things you need to know before arriving at Sibley Heart Center Cardiology: Bring the names and addresses of all your child’s doctors to the appointment. Arrive at least 15 minutes before your child’s appointment to complete first-time visit paperwork. Remember to bring your child’s insurance card, medical referral form, and insurance referral form. To diagnose your child’s heart problems correctly, our staff will ask for your child’s medical history. Please bring any medical records or prior test results that will be helpful for this appointment. Bring your child’s medicines, including vitamins and herbal medicines, or a copy of the prescription and any necessary medical records. Do not use lotions, oils or powders on your child’s skin before the appointment. Talk to your child about the appointment and why they are coming to Sibley Heart Center Cardiology. If they have any questions, our staff will do their best to address the child first at their appointment.…

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From Patient to Dreaming of Medical School

Cain, like many other 16-year-olds, enjoys playing sports, specifically soccer and basketball. What makes him unique is he has been diagnosed with nonrheumatic aortic stenosis, aortic root dilation, and right ventricle to pulmonary artery (RV-PA) conduit obstruction. As you can imagine, these heart conditions keep him on the sidelines more than on the playing field. “Throughout most of my early childhood, I wasn’t aware of my severity of heart problems,” says Cain. “I didn’t realize the parameters that were set on my life until I got to an older age. I can’t play competitive sports, and I can’t do everything my peers can like run or lift weights. Those are things I still struggle with, but it doesn’t hurt me; it’s just different.” When Cain was just two weeks old, his mother Nicole took him in for his scheduled wellness checkup and discovered he had a heart murmur. When Nicole was referred to a cardiologist at Sibley Heart Center Cardiology and agreed to make an appointment for Cain, the doctor urgently replied, “No, I already made an appointment for Cain. You need to go now.” It was at this impromptu appointment where Cain received his diagnosis later that day. “Later…

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I Wouldn’t Change My Life for the World – Anna Grace’s Story

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Heart Warrior Owen

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Heart Dad inspired by transplant recipient daughter

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Heart Warrior Brothers- Miguel and Dominic

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Superhero Scars and No Limitations

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My Child Has CHD – What Happens Now?

For symptoms of CHD in babies, children and teens, Click Here. So you’ve learned that your child has a congenital heart defect (CHD). Their diagnosis might feel overwhelming. You might feel like the world has gone sideways. “My first reaction was to pick my baby up and run out the door; somehow thinking that that would save her life. The feeling was indescribable.” At Sibley, it is our privilege to mend and manage hearts so our CHD patients and their families can get back to living lives simply and to the fullest. If you’re just starting your heart journey, here are the basics of what to expect. Diagnosis “A doctor I didn’t know, with ‘Pediatric Cardiologist’ stitched on his white coat, was at the door. In that moment, I knew our entire world was about to be flipped upside down.” CHD is not diagnosed with a single test. Your doctor will use some combination of family history, risk factors for CHD, a physical exam. Testing may also involve performing an EKG and/or echocardiogram (aka “echo”, which is an ultrasound of the heart). Once you have a diagnosis for your child, here are some basic Do’s and Don’ts that may help…

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Symptoms of CHD in babies, toddlers, preteens and teens

CHD is has a variety of symptoms and not every child presenting with these symptoms has heart problems. (Some kids are just sweaty sleepers, for example.) Symptoms of CHD in kids may appear quickly after birth, but may not show up until your child is a toddler, a teen or a young adult. Babies Persistent fast breathing Heavy breathing, also known as retractions (skin pulling in under rib cage or under neck) Long feeding time, refusal to eat Low energy/activity level Poor weight gain Gums and tongue turning blue, or a blue/grey tinge to the skin Toddlers and Young Children Poor energy level, tiring easily Gums and tongue turning blue, or a blue tinge to the skin Poor growth Chest pain Rapid heartbeat or breathing Passing out Losing their breath during activities sooner than their peers Preteens/Teens Problems with growth/development Fainting/passing out Gums and tongue turning blue, or a blue tinge to the skin Chest pain, especially with exercise Rapid heartbeat or breathing Losing their breath during activities sooner than their peers Palpitations, or hearts beating abnormally or skipping a beat Dizziness with exercise This is not a comprehensive list of all signs and symptoms. Please contact your child’s doctor, if you child experiences…

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Unpredictable Blessings

"I'm sorry, but there is something wrong with your baby's heart," were the words we heard when I was 28 weeks pregnant with our baby, Madden. After trying so hard to get pregnant and to start our family, it was difficult to hear. We were angry, frustrated and sad. We were also confused and didn’t know what having a baby with congenital heart defects would entail. When Madden was born in March 2017, our new reality began. This was no longer a story we were being told about a baby we hadn't met, it was our son’s heart journey. The first thing we learned along the way was that anything can change at any time with a CHD baby. The day after he was born, Madden was transferred to CHOA. His CHD diagnosis changed significantly upon his arrival. We learned that Madden has Tetralogy of Fallot with presence of MAPCAS (major aortopulmonary collateral arteries). This includes a hole in the heart (VSD) and Pulmonary Atresia. At first, we were told that Madden would need an operation very soon and that he would not survive without IVs to provide medications until then. His open heart surgery was scheduled for when he…

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Meet Laura

Sibley is known for our incredible nurses and doctors, but what most parents don’t realize is that we also have a team of specialists who also help to mend and manage children’s health. March is National Nutrition Month, so we’re highlighting our own Sibley Nutritionist, Laura Hamilton.  What do you do here at Sibley? I 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…

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New Depths of Exhaustion… And Immeasurable Joy for Ava and Her Heart Mama

Today, our daughter Ava is a healthy, spunky, medication free, wild and talkative three and a half year old. But where we are today wasn’t certain when I was pregnant with Ava. I was told at my 20-week scan that they wanted me back in 5 weeks because there were some things they couldn’t see. I thought nothing of it. At that 25-week follow up, we learned something was not right and were immediately sent to Atlanta Perinatal Consultants. After two not quite right diagnoses, we were sent to Sibley. My husband Chandler and I felt desperate for knowledge, for answers, for hope. It was at Sibley that we finally were given some answers – Ava was diagnosed with Shone’ Syndrome – and a surgical plan. We got to tour the CICU at Children’s Healthcare of Atlanta at Egleston, which gave us a little glimpse into our future. When I delivered Ava, Sibley doctors came straight to Ava’s NICU. They performed some tests and talked to us. Sibley was always on top of things, which gave me a sense of security. At 6 days old, Ava underwent open heart surgery to repair her coarctation and close one of her VSDs. Over…

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It’s About What I Can Do, Not What I Can’t

“We were lucky in the sense that we knew to be looking for signs and symptoms as Rolfe’s father had Marfan Syndrome,” says Tasha. “Getting Rolfe’s diagnosis was pretty simple, as he had physical symptoms that made diagnosis easier to make so early. Not everyone with Marfan is tall and thin, but Rolfe was 23 ¾ inches at birth and weighed 10 pounds.” “At first, it was really overwhelming. I wondered, ‘How will I ever learn everything about his condition? What will his future look like?’ I had an almost grieving period for what I had envisioned life would be like,” says Tasha. “But I also had determination and a feeling of empowerment. Another Marfan Mom told me to relax. She told me that I would become an expert in my child’s condition, often times educating doctors on this uncommon condition. That said, I haven’t had to educate Dr. Sallee – he’s amazingly informed!” A Family’s New Normal “Rolfe has had 4 surgeries so far,” says Tasha. “A left lens removal, left lens muscle correction, an aortic root replacement (valve sparring, David’s procedure) and a modified Ravitch for pectus carinatum.” “I remember that when I was little and wanted to…

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