Local family shares story during Congenital Heart Defect Awareness Week
DURHAM (WTVD) -- As you know, ABC11 is proud to Go Red this month to raise awareness of heart disease. As part of that, this week is CHD Awareness Week, which stands for congenital heart defect, something that hits home for one Goldsboro family.
Jason Kendall's parents say their sweet 14-month-old is all boy, curious and cuddly, everything you'd expect at this age. But there are a few things that set him apart from his pint-sized peers.
"We used to call him our little smurf baby, because he turns blue sometimes, and that's always scary, his little hands and feet and lips turn blue," says his mom, Caroline.
Jason has CHD which was actually diagnosed while his mother was six months pregnant.
"Being a new mom is one thing, but being a new heart mom is completely different," adds Caroline.
It's a diagnosis that's more common than most people realize. Duke Pediatric Cardiologist Piers Barker says one out of every 100 children will be born with some type of heart condition, CHD being one of them.
"Congenital Heart Disease [congenital heart defect] really refers to heart disease that children are born with, so something that may have begun with development while in the womb, but we also look after children who develop heart disease during childhood," explains Dr. Barker.
Dr. Barker was actually one of the doctors Jason saw while he was in and out of Duke University Medical Center for treatment.
"Four days after birth he had his first open heart surgery...he had his second open heart surgery May 6 and we were only in the hospital five days that time," said Caroline.
Jason also suffered a blood clot in his heart at just two months old, and ended up contracting both bronchitis and pneumonia due to his weakened immune system. But, he fought through it all, and now his family hopes his upcoming third heart surgery will be his last.
"I hope to God that's the way it works out. The cardiologist said his oldest patient is 37 years old with the same heart he worked on when he was 17, with the same sort of condition, so I'm looking forward to this being a permanent fix," says his dad, John Kendall.
And doctors say that's a likely scenario, as treatment options for CHD now have a high success rate, ranging from medication to surgery.
"Congenital Heart Disease [congenital heart defect] in 2015 can definitely be treated and our goal here at Duke is to have every child really grow up to be as normal as possible," Dr. Barker shares.
And that's certainly what Jason's parents hope for him.
Most cases of CHD are caught before birth, but other signs to watch out for with infants include turning abnormally blue after being born or difficulty feeding or gaining weight in early infancy. For older children, watch for signs such as an abnormal heart murmur, chest pain or fainting while exercising.
