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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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