The Boston Children’s Cardiac Neurodevelopmental Program treats young people who have complex congenital or acquired heart disease. Our team of specialists works closely with families and their health care providers to support those with heart disease from the time of prenatal diagnosis until age 24, and help them meet their unique goals.
Thanks to medical advances, almost all children born with congenital heart disease (CHD) grow up to be adults, and most live relatively long and healthy lives. However, despite their improved medical outcomes, children with CHD often experience challenges in many areas of development. Young children often have trouble eating, sleeping, talking, and moving around as expected, while older children often have difficulty with tasks such as learning at school, paying attention, and making friends. Many teenagers and young adults with heart disease struggle to achieve typical milestones of independence, and may have more trouble than many peers launching into adulthood. Teams of researchers at Boston Children’s and other institutions have discovered that these varied developmental issues are often connected to heart disease, and that children with complex CHD are more likely than other children to have developmental, behavioral, or learning challenges.
Recognizing the many challenges facing families with heart disease, the Cardiac Neurodevelopmental Program was founded to accompany patients and their families on their journeys with complex heart disease, and help them face obstacles with knowledge and resources. Our program complements children’s core medical care by monitoring their development and learning, and proactively connecting them to resources that can help them meet their developmental and personal goals. Along the way, our clinicians develop strong and lasting relationships with our families, and we celebrate the personalities and strengths of each of our patients and their families. If you or your child has CHD, we hope you will let our team walk with you on your journey.
Why Cardiac Neurodevelopment?
Young people with complex heart disease are amazing. They overcome incredible odds just to survive, and they offer unique gifts to the world. But in addition to medical challenges, young people with CHD can also face developmental risks, which can include problems with:
- feeding and sleeping
- motor skills
- social skills
- attention and executive functions
- anxiety or depression
- family stress
- the transition to adulthood
Why choose the Cardiac Neurodevelopmental Program?
Regular monitoring, early intervention, and appropriate services from birth through adulthood can help those with CHD live fulfilling lives and meet their potential.
The American Heart Association and the American Academy of Pediatrics recommend that children with CHD who have had at least one heart surgery participate in regular surveillance and assessment to monitor their development. Following this recommendation, the Cardiac Neurodevelopmental Program uses an early detection model to:
- identify developmental challenges as soon as possible
- develop customized treatment plans
- intervene quickly and effectively
We follow a compassionate, family centered approach to diagnose and treat neurodevelopmental disorders. We understand that children with congenital heart disease need care and support that extends beyond cardiovascular health. Our team collaborates closely with world-class Boston Children’s specialists in cardiology, cardiac surgery, developmental medicine, genetics, neurology, psychiatry, and radiology to provide the highest standard of care in every area. It’s a complete team effort as we work closely with your family, your child’s school, and your local health care provider to coordinate your child’s treatment plan.
Who are our patients?
The Cardiac Neurodevelopmental Program serves children with a wide range of complex cardiac conditions and genetic syndromes. Our cardiac patients range in age from birth to 24 years, and we offer prenatal therapy to expectant parents, plus parent guidance to caregivers. Most of our patients have had heart surgery as babies, though some acquire or are diagnosed with heart conditions later in life.
Your child may qualify for our program if they had:
- a congenital heart disease (CHD) diagnosis
- heart surgery
- heart catheterization
- a heart transplant or evaluation for heart transplant
- heart failure
- a genetic diagnosis associated with complex heart disease
Not sure if your child qualifies for Cardiac Neurodevelopmental Program services? Our coordinators will be happy to talk with you. (617-355-3401 or CNPschedulingandquestions@childrens.harvard.edu)