Cardiac Neurodevelopmental Program | Overview

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Contact the Cardiac Neurodevelopmental Program

Boston Children's Hospital is home to a dedicated Cardiac Neurodevelopmental Program – part of the #1 ranked Heart Center in the U.S. – providing comprehensive neurodevelopmental assessment, school consultation services and short-term treatment for children with congenital heart disease and their families.

While survival of children born with complex congenital heart defects (CHD) has improved dramatically, they remain at substantially increased risk for developmental, learning and behavioral disorders.

Jane W. Newburger, MD, MPH of Boston Children's Hospital's Cardiac Neurodevelopmental Program and Janice Ware, PhD, speak about the long-term view after pediatric open-heart surgery.

Much of our work primarily focuses on children:

Our Approach

Boston Children's Hospital’s Cardiac Neurodevelopmental Program was established in 2006. The program provides comprehensive, evidence-based neurodevelopmental assessment, second opinions, consultation and intervention services by a team of specialists. Children birth to 24 years with a history of severe CHD are eligible to be seen in the program. Prenatal parent guidance consultations are available following early identification of CHD.

The program uses a compassionate, family-centered approach to the diagnosis and treatment of neurodevelopmental disorders, which includes partnering with each family's local pediatrician to develop a transparent, multi-disciplinary approach to care. The approach to clinical care in the Cardiac Neurodevelopmental Program is based on findings from Newburger and Bellinger’s extensive, pioneering research on thousands of children. Their work has enabled us to develop systems of assessment and treatment that focus on the unique neurodevelopmental signature of children with CHD. Evaluation in the Cardiac Neurodevelopmental Program results in the creation of individualized treatment programs unique to each child, yet based upon years of comprehensive study across huge pediatric population sets.

Additionally, we are assembling a unique registry of information that includes medical and neurodevelopmental information for each child participating in the Cardiac Neurodevelopmental Program. This serves as a rich data source for research into the effects of pediatric heart disease on neurodevelopment, with 90% of patient families choosing to automatically have their child’s information added to the registry so that we may leverage this data to help shape future patient care plans.

Our work focuses on a broad range of complex cardiovascular conditions, including large numbers of children with rare conditions who are transferred to Boston Children’s because of the hospital’s extensive experience with treating challenging and rare conditions. Our hospital’s setting enables us to leverage world-class cross-discipline talent from across the organization in order to evaluate and care for our patients like no other hospital can. Our experienced clinicians understand that children with CHD need care and support that extends beyond their cardiovascular health. We work closely with families, schools and other medical providers to:

  • help identify neurodevelopmental issues as early as possible
  • design customized treatment plans
  • aid each child in reaching his or her fullest potential

The infants, children and expectant parents seen by our Cardiac Neurodevelopmental Program are referred from many different sources including:

  • cardiologists
  • cardiac surgeons
  • neurologists
  • nurses and nurse practitioners
  • occupational and physical therapists & other allied health professionals
  • parents
  • pediatricians
  • psychologists and psychiatrists
  • special educators

Our team collaborates closely with Children’s specialists in Cardiology, Cardiac Surgery, Developmental Medicine, Genetics, Neurology, Psychiatry and Radiology to provide the highest standard of care in every area.

The Cardiac Neurodevelopmental Program cares for children of all ages (including prenatal consultations) with congenital heart conditions. Patients are seen during their inpatient stays and after discharge in our outpatient clinic. Our patients and families come from throughout the greater Boston area, across the nation and around the world.

Our Founding

The landmark work by the Boston Children’s research team led by Jane Newburger, MD, MPH and David Bellinger, PhD first identified typical patterns of development seen in children with severe CHD. Their work described the now universally accepted and unique patterns or “developmental signatures” seen in children with different forms of early heart disease.

In response, specialized cardiac neurodevelopmental programs are rapidly emerging in major teaching hospitals in the U.S. and abroad. The Cardiac Neurodevelopmental Program at Boston Children’s is a founding leader in this field and serves as a care model for other institutions around the world. Recently released guidelines from the American Heart Association and the American Academy of Pediatrics recommends systematic neurodevelopmental follow-up from infancy through adolescence (and beyond) as an integral part of care. Boston Children’s Cardiac Neurodevelopmental Program has assembled a multidisciplinary team of cardiovascular surgeons, geneticists, educational specialists, pediatric cardiologists, pediatric neurologists, child psychologists and pediatric neuropsychologists who provide innovative follow-up care for children in a compassionate, family-centered environment.

We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”
- Sandra L. Fenwick, President and CEO

Boston Children's Hospital 300 Longwood Avenue, Boston, MA 02115 617-355-6000 | 800-355-7944