Just 30 years ago, prospects for babies born with the most serious forms of congenital heart disease were grim: only 20 percent reached adulthood. Recent advances in prenatal and pediatric cardiovascular care and cardiac surgery have brightened the long-term outlook, as today, more than 90 percent of children with congenital heart disease survive well into their adult years. In the United States alone, this new trend can be classified as "a tsunami of survivors," says Jane W. Newburger, MD, MPH, associate cardiologist-in-chief for Academic Affairs at Children's Hospital Boston.
But in tandem with this increase in survivorship comes a significant risk of lifelong developmental difficulties that can impact survivors' learning, behavior, mental health and interpersonal relationships. Such problems can range from nutritional deficiencies and early motor delays to struggles with higher-order thinking. "This isn't just an issue that affects patients and their families," says Dr. Newburger. "It's also a societal issue, an educational issue and an economic issue. We want these kids to reach their full potential at school and at work and to feel good about their achievements—to realize the very best of themselves."
The CNP provides a broad range of services that address the needs of children with cardiac disease and their families, including:
- comprehensive psychological assessments that
address cognitive, learning, behavioral and
- guidance and support for expectant parents
whose babies have been diagnosed with cardiac
disease in utero
- interventions for children and families to address
regulatory disorders such as feeding, sleeping
and behavior difficulties
- school consultations to design and implement
special education services
Dr. Newburger has spent several years collaborating with David Bellinger, PhD, senior research associate in Neurology at Children's, to study the long-term neurological, psychological and psychosocial outcomes for children and adolescents with cardiac disease. Incorporating aspects of their work—and recognizing the lack of specialized resources for this burgeoning population—Dr. Newburger began referring her cardiovascular patients to Janice Ware, PhD, senior psychologist in Children's Developmental Medicine
"Dr. Newburger and Dr. Bellinger's landmark research identified children with congenital heart disease as a group at very high risk for ongoing developmental, learning and behavioral problems," says Dr. Ware. "Their work underscored the fact that a child's development extends far beyond how well the heart is working. Parents go home from the hospital to face a set of problems they were not anticipating. Typically, local services and schools don't know how to help children with cardiac histories; they have limited understanding and few resources to guide them."
Determining that an organized clinical approach was necessary, Dr. Newburger and Dr. Ware—together with Frank Pigula, MD, of Children's Department of Cardiac Surgery—formed the Cardiac Neurodevelopmental Program (CNP) at Children's in 2008.
Today, the program:
- provides neurodevelopment consultation services for every newborn with a cardiovascular condition prior to initial discharge from the hospital
- offers ready access to ongoing, comprehensive neurodevelopment assessment services with an interdisciplinary team experienced in the developmental care of children with cardiac conditions
- includes services for children with a broad spectrum of cardiac diagnoses
Dr. Newburger describes the CNP as "a strong supporter of early intervention." In the past, she says, "some doctors, when talking to the parents of a newborn with a heart ailment, would avoid discussing the potential for future learning and development problems. The focus was only on the function of the heart." However, similar to the way that understanding of preemies' needs has evolved over time, "we now know that parents shouldn't wait until neurological and psychological problems become noticeable to start addressing those issues," she says. "Every baby with a cardiac problem should leave the hospital with, at the very least, an initial consultation with a neurodevelopmental specialist."
One of CNP's key initiatives is developing a central registry of children with congenital heart disease who have received neurodevelopmental care. "We ask all of our patient families if they'd consider being added to the registry," explains Dr. Ware. "Our goal is to build a standard set of data for future clinical and research undertakings." She and Dr. Newburger have also begun building a network of community resources that includes psychoeducational seminars for parents, adjustment groups for children with ongoing medical needs and their siblings and a strong school consultation program that provides hands-on assistance for families.
The Cardiac Neurodevelopmental Program receives referrals from within and beyond Children's.
Increasingly, referrals are coming from pediatric cardiologists and cardiovascular surgeons from throughout New England and across the country. "We want our program to serve as a local, national and international resource," says Dr. Newburger.
Make a referral: 617-355-3401