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 children's hospital in the U.S. The Cardiac Neurodevelopmental Program serves children with congenital heart disease, and the people who love and care for them. The Program supports patients throughout childhood and into early adulthood:

  • Neurodevelopmental assessment
  • School consultation
  • Short-term treatment

Thanks to medical advances, children born with complex congenital heart defects (CHD) now usually survive into adulthood, and often enjoy relatively healthy lives. However, children with a history of heart disease are more likely than other children to have developmental, behavioral, or learning challenges. They sometimes experience problems with:

  • Feeding and sleeping
  • Language
  • Motor skills
  • Social skills
  • Behavior
  • Learning 
  • Attention and executive functions
  • Anxiety or depression
  • Family stress
  • Transition to adulthood

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.

At the Cardiac Neurodevelopmental Program, we work to help children with heart disease thrive, not just survive. We use an early detection model to:

  • Identify developmental challenges as soon as possible
  • Develop customized treatment plans
  • Intervene quickly and effectively

The program uses a compassionate, family-centered approach to diagnose and treat neurodevelopmental disorders. We partner with each family's local pediatrician to develop a transparent, multi-disciplinary approach to care. Informed by cutting-edge research, our clinicians develop an individualized treatment program for each child.

Since we are located in Boston Children’s Hospital, we are able to benefit from world-class talent across many disciplines. Our experienced clinicians understand that children with congenital heart disease need care and support that extends beyond their cardiovascular health. Our team collaborates closely with 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. We work closely with families, schools, and other providers in the community to coordinate children’s treatment plans. We work with professionals including:

  • Cardiologists
  • Cardiac Surgeons
  • Early Intervention Providers
  • Neurologists
  • Nurses and Nurse Practitioners
  • Occupational Therapists and Physical Therapists 
  • Parents
  • Pediatricians
  • Psychologists and Psychiatrists
  • Special Educators
  • Speech/language pathologists
  • Teachers

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.

The program helps children reach their potential, and supports caregivers in meeting their children’s needs.

What Happens During a Visit?

The Cardiac Neurodevelopmental Program serves patients with CHD from birth to age 24 years. Children are seen in both inpatient and outpatient settings.

At each visit, a clinician assesses the child’s development, talks with caregivers about their questions and concerns, and makes recommendations.

Psychologists and neurologists measure:

  • How the child thinks, reasons, and remembers
  • How the child learns and achieves at school
  • The child’s social functioning and emotional well-being
  • How the child’s brain and nervous system work
  • The child’s attention and behavior
When clinicians notice that a child is having difficulties, they connect families with services, information, and strategies to help. In some cases, clinicians provide short-term therapy or educational opportunities. The CNP is available for additional consultation, evaluation, and support as needed.

Who are our patients?

The Cardiac Neurodevelopmental Program serves children with complex cardiac conditions, and their families. Patients range in age from birth to 24 years, and we also conduct prenatal consultations. Most of our patients have had heart surgery as babies, though some acquire their heart conditions later in life. Patients’ diagnoses include:

  • Aortic Valve Stenosis (AVS)
  • Anomalous Coronary Artery (ACA)
  • Atrial Arrythmia
  • Atrial Septal Defect (ASD)
  • Atrioventricular Canal Defect (AV Canal)
  • Coartation of the Aorta (CoA)
  • Dilated Cardiomyopathy 
  • Double Outlet Right Ventricle
  • Ebstein’s Anomoly
  • Endocardial Cusion Defect/AV Canal Defect
  • History of Extra Corporeal Membrane Oxygenation (ECMO)
  • Heart Failure
  • Heart Transplant
  • Hypertrophic Cardiomyopothy
  • Hypoplastic Left Heart Syndrome (HLHS)
  • Marfan Syndrome
  • Mitral Valve Stenosis
  • Myocarditis
  • Noonan Syndrome
  • History of Pacemaker
  • Pulmonary Atresia with Intact Ventricular Septum (PA/IVS)
  • Pulmonary Valve Stenosis
  • Pulmonary Vein Stenosis
  • Single Ventricle Defects (SVD)
  • Shone’s Syndrome
  • Tetralogy of Fallot (ToF)
  • Tetralogy of Fallot with Pulmonary Atresia (ToF/PA)
  • Total Anomalous Pulmonary Venous Connection (TAPVC)
  • Transposition of the Great Arteries (TGA)
  • Tricuspid Atresia
  • Tricuspid Valve Stenosis
  • Truncus Arteriosis
  • Velocardiofacial Syndrome (22q11 or VCFS)
  • Ventricular Arrythmia
  • Ventricular Septal Defect With Interrupted Aortic Arch (VSD/IAA)
  • Ventricular Septal Defect (VSD) Without Interrupted Aortic Arch
  • History of Ventricular Assist Device (VAD)
  • Other genetic syndromes with cardiac involvement

Genetic Conditions

Many of our patients are diagnosed with genetic syndromes or associations in addition to their cardiac conditions. We treat patients with genetic diagnoses such as:

First Steps

Not sure whether your child qualifies for Cardiac Neurodevelopmental Program services? Just ask! The CNP Coordinators will be happy to talk with you. Please call 617-355-3401 for assistance.

Our Founding

In 2003, a Boston Children’s Hospital research team led by Jane Newburger, MD, MPH and David Bellinger, Ph.D. published the Boston Circulatory Arrest Trial. They demonstrated for the first time that children with complex congenital heart disease are at elevated risk of neurodevelopmental problems. Their research made it clear that children with complex CHD require more than just excellent cardiac care: they require comprehensive developmental care throughout their childhoods and early adulthood.

In response to the demonstrated need for neurodevelopmental care of children with heart disease, the Cardiac Neurodevelopmental Program was founded in 2008 by Drs. David Bellinger, Ph.D., Jane Newburger, M.D., and Janice Ware, Ph.D. They assembled a multidisciplinary team of experts from the fields of cardiovascular surgery, genetics, education, cardiology, neurology, psychology, and pediatric neuropsychology. This team works together to provide innovative developmental care within a compassionate, family-centered environment.

In 2012, the American Heart Association (AHA) released guidelines describing the developmental disorders faced by many children with complex congenital heart disease, and recommending regular neurodevelopmental care. They recommended that children with heart disease should be evaluated at regular intervals, and should be referred for intervention or therapies as needed throughout their childhood. As a leader in the field of Cardiac Neurodevelopment, the Cardiac Neurodevelopmental Program follows AHA guidelines, and provides cardiac patients with the neurodevelopmental care they need. 

Boston Children’s is so much more than a hospital—it’s a community of researchers, clinicians, administrators, support staff, innovators, teachers, patients and families, all working together to make the impossible possible. ”
- Sandra L. Fenwick, President and CEO

Boston Children's Hospital
300 Longwood Avenue, Boston, MA 02115
For Patients: 617-355-6000
For Referring Providers: 844-BCH-PEDS | 844-224-7337

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