About 35,000 babies are born with congenital heart disease in the United States every year.
Better open-heart surgery techniques mean kids are now living with diseases that used to be fatal. For a host of reasons connected to neurological development and reduced oxygen reaching the brain, about a third to a half of kids with congenital heart disease have behavioral issues, such as hyperactivity and poor fine-motor skills. Doctors are still learning more about how the heart and mind are connected in these cases.
“Really, up until maybe the last 15 years, the surgical mortality rates were still quite high,” said Dr. Gil Wernovsky, associate chief of pediatric cardiology at The Children’s Hospital of Philadelphia. “There were not a lot of (kids with congenital heart disease) entering the school systems until the last 10 or 15 years, and it’s really only then that some of these issues have become apparent.”
CHOP is hosting an event for kids with heart disease and their parents to learn about the latest research into neurological disorders associated with congenital heart disease and how to access support services in schools.
One of those who will attend is Trenton firefighter Joseph Bryce, who found out that his son might have a serious heart disorder when his wife was still pregnant.
“It was a pretty traumatic experience,” Bryce said. “It was a very hard time to tell you that there’s a possibility that your child here has a heart condition.”
When his son was born, only the left half of his heart worked. Three open-heart surgeries later, his heart is fine but the 6-year-old is developmentally delayed. Bryce said he and his wife were not told when his son was born about the increased risk for behavioral issues. He attends the CHOP event each year to learn more about recent neurological research and pick up tips on how to fight for the services his son needs at school.
“To get all that information and have it in your toolbox, to be an advocate for your child, you’re gonna gain a lot of headway,” Bryce said.
Bryce’s son, also called Joseph, will start kindergarten in the fall.