CRAVEN COUNTY - It's Congenital Heart Defect Awareness Week, and according to the CDC, one in 100 babies is born with a heart defect.
New Bern Mayor Lee Bettis just signed a proclamation in honor of the awareness week, citing the facts that heart defects are the number one birth defects in babies and that some heart defects still go undetected.
One extended family in Craven County has seen babies born not once, but twice, with heart defects. They're telling their stories in hopes they might help and alert other families.
At two years old, Claire Scott of Pollocksville is full of sweetness and that non-stop toddler energy. "She's into everything and learning and she's running everywhere she goes," explains Claire's mom, Rebecca Scott.
But before Claire was even born, an ultrasound revealed something that made her parents' hearts skip a beat. "You go in to find out if you're having a boy or a girl, you don't expect to find out their heart is broken," says Scott.
But Claire's was. It was a big defect with a big name. "They discovered she had a heart defect called Tetralogy of Fallot." It was going to take a big surgery on a very tiny baby to fix it. Scott says, "so we knew that she was going to have to have heart surgery when she was born."
Then came another hurdle. Claire was born premature - at 29 weeks and weighing three pounds - she was too small for her life-saving surgery. It took four months of waiting before she was big enough at eight pounds.
"When they did her open heart surgery, the doctors said her heart was about the size of a small strawberry," explains Scott. The surgery was a success.
But 14 months later, there was another broken heart. This time it wasn't Claire's, but her cousin's, Ryland McKeel.
"We were expecting to have a perfectly normal baby, and when he was born, everything seemed normal," describes Robin McKeel, Ryland's Mother.
Well, almost everything seemed normal. From birth, Ryland McKeel wouldn't eat much. Dr. Dennis Steed with the East Carolina Heart Institute says that is a major symptom. "Babies who are in congestive heart failure would tend to wake up very hungry, try to eat, tire our quickly, fall back asleep, wake up irritable because they're hungry."
At 11 days old, Ryland was rushed to the doctor. "By the time we got there, he crashed. So we went from thinking we had a perfectly healthy baby who maybe just had a fever or cold... to he's blue," says McKeel.
Ryland was flown to Vidant Medical Center in Greenville where he was diagnosed with a heart defect. McKeel says, "it was like they ripped my heart out... he has an interrupted aortic arch and an AP window defect."
At 17 days old, Ryland underwent open heart surgery. It too was a success.
For all that Claire and Ryland have been through, the long term prognosis is a good one. Doctors say they can play and grow just like any other child. They will have one visit with the cardiologist per year, possibly for the rest of their life, but other than that, they're just like any other kid.
"These babies are tough. They've been through a lot and are strong, and they have special hearts," describes Scott.
"Heart Cousins" if you will, both given a second chance. "It's the best thing in the world, it is," says Ryland's mom.
You can learn more about congenital heart defects, symptoms to watch for and what you can do for awareness week by visiting the Congenital Heart Information Network.
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