What parents need to know — and who they should seek out — to support neurodevelopment for children born with CHD.
Congenital heart disease is the most common birth defect, occurring in about one in every four babies born. Children with critical forms of congenital heart disease (CHD) — like those with single ventricle defects such as hypoplastic left heart syndrome — are often known as “heart warriors” owing to the huge obstacles they overcome in their young lives.
Fortunately, thanks to advances in surgical treatments, more and more of these heart warriors are surviving until late adulthood — a true testament to modern medicine. Because of this, knowledge of long-term outcomes for CHD continues to evolve. Research suggests that although mild forms of CHD are not often associated with adverse developmental outcomes, children born with critical forms of CHD can exhibit behavioral, developmental and neurological differences overtime. Co-existing factors such as having a genetic syndrome along with CHD can increase these risks.
“We never know how much a specific child is going to manifest in terms of neurodevelopment,” said Dr. Jamie Colombo, a cardiologist who’s the co-director of the Single Ventricle Program at Monroe Carell Jr. Children’s Hospital at Vanderbilt. “There’s such a wide array of manifestations. In infants, hypotonia and gross motor delays are most common. In school-aged children, executive functioning difficulties — difficulty with sustained attention, planning/organizational skills and working memory — are commonly reported.”
High-risk factors that can impact neurodevelopment
Colombo notes that the following are considered factors that can increase the risk for neurodevelopmental delays:
- Having open-heart surgery within the first year of life, and especially within the first 30 days of life
- Being born with a cyanotic form of congenital heart disease
- Prematurity or low birth weight (< 5 lbs)
- Known genetic abnormalities
- Prolonged hospitalizations
- Requiring mechanical ventilation such as ECMO (artificial heart support), either before or after surgery
- Experiencing a cardiac arrest
- Heart transplantation
- Post-operative complications such as seizure or stroke
“We may not know how these things will play out,” Colombo said, “but I tell parents it’s our goal to get your child to go to kindergarten. It’s our goal to get your child to thrive in a normal school environment and to go to college if they so choose. And, therefore, it’s our job to enroll them in early therapies — both during their hospital stay and beyond — and to get you the resources you need to make sure their development continues to progress.”
“We may not know how these things will play out, but I tell parents it’s our goal to get your child to go to kindergarten. It’s our goal to get your child to thrive in a normal school environment and to go to college if they so choose.”
Early detection and intervention is key
If your child falls into one of these high-risk categories, both Colombo and her colleague Allie Wroblewski, PhD, a pediatric psychologist and cardiac neurodevelopment expert in Vanderbilt’s Single Ventricle and High Risk Infant Multidisciplinary Clinic and Fontan Clinic, stress the importance of early detection and involvement in developmental therapies beginning in infancy.
The Neonatal Follow-up Clinic at Monroe Carell includes a team of developmental specialists who can help screen and monitor development over time for babies who were born prematurely, had a low birth weight, complex medical history or ongoing medical problems. Parents are also encouraged to ask their pediatrician for help in getting connected with early intervention services in their state.
“Neurodevelopmental monitoring and surveillance beginning in infancy, as well as early involvement in developmental therapies is the best way to optimize a child’s neurodevelopmental regardless of their specific risk factors,” Wroblewski said.
“For younger kids, we want them to access early intervention services as soon as possible and to maximize them as much as possible,” Wroblewski said. These services typically include physical, occupational, speech and developmental therapies.
“We want to ensure that parents don’t feel like they have to seek out information and resources on their own. It’s so much easier when it can be part of their health care — when we’re all connected.”
As children with CHD enter school, Wroblewski helps educate parents on learning supports and resources available.
“I often hear parents report that their child exhibited mild developmental delays or did well in early childhood, but then appear to struggle as they approach adolescence or enter middle school,” she said. “The most common areas of concern include difficulties with attention or focus, problems with organization and planning, inflexibility and problems with emotion regulation or anxiety.”
She adds that many schools are unfamiliar with the link between CHD and neurodevelopment. “I spend a considerable amount of time talking with parents about how they can best advocate for their child by requesting accommodations that directly support these skills in the classroom,” she said. Wroblewski also encourages parents to monitor for symptoms of anxiety as children with complex congenital heart disease have a five-fold increase in rates of anxiety compared to children without CHD.
It can be overwhelming, to be sure. But health professionals like Colombo and Wroblewski want parents to know that their health team is on their side. “We want to ensure that parents don’t feel like they have to seek out information and resources on their own. It’s so much easier when it can be part of their health care — when we’re all connected.”
Personalized care for your child’s heart
The Pediatric Heart Institute at Monroe Carell Jr. Children’s Hospital at Vanderbilt is a national leader in the care of children with heart-related conditions.