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Lydia Butler’s heart problems were so severe that she had three open-heart surgeries by the time she was 4 years old.
Today, doctors are not only keeping an eye on the 7-year-old’s heart. They also are trying to figure out what is going on inside her brain.
Lydia has a diagnosis of developmental coordination disorder and attention deficit hyperactivity disorder (ADHD). Researchers at Cincinnati Children’s say she is an example of how congenital heart disease and developmental disorders such as ADHD are linked.
“We know that children with serious congenital heart disease actually have abnormal brain development in utero,” says Bradley Marino, MD, MPP, MSCE, Director of the Heart Institute Neurodevelopmental Clinic at Cincinnati Children’s. “We now know that children who have serious heart disease will have, on average, a lower quality of life than children who are heart-healthy.”
Pediatric heart patients are at a greater risk for developmental deficits not just because of their cardiac abnormalities but because factors such as premature birth, genetic syndromes, seizures or interrupted blood flow to the brain during heart surgery can contribute to developmental problems, Marino says.
The neurodevelopmental science involving these factors is pushing research about “cardiac kids” to a new frontier. Doctors are looking beyond helping kids survive heart surgery. They are trying to find ways to help these kids thrive in the rest of life.
Marino, Director of the Heart Institute Research Core, is the lead author of guidelines published this summer by the American Heart Association, stating that children with congenital heart disease should be screened early and regularly for a variety of cognitive developmental deficits.
The guidelines help establish which children with heart disease are at the greatest risk. Scientists now have a better idea which factors predict better or worse outcome.
Periodic screening and follow-up visits throughout childhood can identify problems early, Marino says, so experts can come up with a plan of appropriate therapies to help the children do well at school, with their peers and at home.
“The mantra is, we want the kids to survive and thrive,” he says. “We’re just to the cusp right now of interventions. The next 10 years of my career is devoted to figuring out what interventions to put in place to mitigate or to treat problems moving forward.”
Jeff Epstein, PhD, Director of the Center for ADHD at Cincinnati Children’s, says it makes sense that ADHD research is moving in this direction.
“It is not surprising that a childhood condition such as congenital heart disease, which is often associated with a variety of physiological stressors affecting neurological function could lead to risk for developmental and attentional disorders,” Epstein says.
The next step is to work on better ways to treat kids with these problems.
“Given this established relation between congenital heart disease and developmental and behavioral disorders,” he says, “caregivers need to know this possible area of risk.”
That way, children can be screened early and repeatedly as they develop to make sure they are properly diagnosed and get the right intervention.
Lydia Butler’s medical journey began when she was five days old and her parents found out she had a heart murmur. Tests revealed she had tricuspid atresia, a defect that blocked the blood flow from her heart to her lungs to get oxygen. She would need three surgeries to fix it.
At first, her parents worried about just getting her through the surgeries. After crossing that hurdle, they realized there was a lot more to come.
Lydia was diagnosed with ADHD. It made her seem inattentive. She also had a developmental coordination disorder that made it hard for her to do things such as grasp a crayon.
Kids who survive complex congenital heart disease have signature neurodevelopmental issues like these, Marino says. It may not be the typical learning disability that schools are used to seeing, he says, but problems can range from ADHD to issues with motor skills and visual construction and perception.
“All of these things coming together can make it harder for them to learn,” he says.
“A generation ago, if a child who had very complex congenital heart disease survived, it was a victory,” Marino says. “Today, most people don’t understand that when they leave the cardiac intensive care unit, the journey is just beginning.”
Marino helped establish the Heart Institute Neurodevelopmental Clinic at Cincinnati Children’s to work on what happens next. The clinic links the general pediatrician, pediatric cardiologist and neurodevelopmental support staff to work as a team and partner with the schools to help maximize the patient’s quality of life.
The clinic’s specialists diagnosed Lydia and provided a letter to her school explaining her needs. They came up with a treatment plan and provided an education specialist to work with her school.
“When you come to our clinic now as an infant or toddler or preschooler, our job is to figure out early what the issues are,” Marino says, “so by the time you get to school, there is an individualized education plan for that child”.
Lydia’s mom Lisa says the clinic gave her answers for things that otherwise might have taken years to figure out.
“I don’t feel like I have to do it alone anymore,” she says. “Now we have a whole team for Lydia. It’s not just about getting her to survive. It’s about getting her to survive and do well.”
Lydia, a second-grader who loves dancing and horses, hugs her doctors and considers them an extended family.
“I feel special that I’m a heart kid,” she says.
Her mother hopes things only get easier from here.
“Having a heart kid is never easy,” she says. “But having a team behind you that you know genuinely cares about your child and can help you meet their needs is a priceless experience.”
Lydia Butler with her mother, Lisa.
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