Cardiac Neurodevelopment Overview
Welcome! We have created this guide for the congenital heart defect (CHD) community in the hope of providing fulfilling lives for all people with heart defects. While almost every baby born with a heart defect lives to adulthood, some face neurodevelopmental delays or disabilities that can reduce their quality of life. We don't need to accept this outcome. Well-timed and appropriate interventions can help people with heart defects to find their strengths, to reach their goals, and to thrive.
Building resilient kids
When a baby is born with a heart defect, they face obvious medical risks. But babies with heart defects also face other risks that might not be as obvious or as visible. Even though developmental delays and disabilities do not threaten a child’s life, they can threaten their quality of life. Intervention reduces this risk, and helps children to develop to their potential.
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Who We Are: Boston's Cardiac Neurodevelopment Program
We are a multidisciplinary team of clinicians and researchers who are united by a single goal: to improve the developmental outcomes of children born with heart defects. We collaborate with experts across the US and around the globe to discover best practices in the care of people with heart defects.
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Specialized help is available
Cardiac developmental follow-up programs offer specialized care to kids born with complex heart defects. They provide services such as evaluation, consultation, and therapy, and can help to coordinate care within a hospital and through a community.
Every developmental program is different, and has their own combination of providers and services. However, they are all united by a dedication to serve the needs of children and families affected by heart defects.
Who's Who in your Developmental Follow-Up Program
who can help, and how
Cardiac neurodevelopmental follow-up programs share a common mission, and a common understanding of heart defects. They collaborate in research, and in sharing clinical discoveries.
Programs vary in their scope and design. They have different combinations of team members, and perform different services. If a program does not provide a particular service for a particular type of patient, they can refer families to someone who does.
Look below to learn who might be working in your program.
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Psychologist or Neuropsychologist
A psychologist or neuropsychologist is an expert in how people think, feel, and learn. They may do evaluations, consult with families, and offer therapy.
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Neurologist or Neurology Nurse Practitioner
A neurologist is an expert in the brain, spinal cord, and nerves. They might perform assessments, consult with families, order medical tests including MRIs, and prescribe medications.
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Educator
An educator is an expert in how children learn, and how schools can meet children's needs. They might perform education evaluations, consult with families, join school meetings, train teachers, and observe kids at school.
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Cardiologist
A cardiologist is an expert in the heart and the blood vessels. They might provide cardiac care, advocate for neurodevelopment in their hospital, consult with families, and monitor development.
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Social Worker or Clinical Social Worker
A social worker is an expert in how to help people through challenges. They might connect people to resources, coordinate care, and offer therapy.
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Developmental - Behavioral Pediatrician
A developmental-behavioral pediatrician is an expert in how children grow and develop across domains, including children with developmental delays or disabilities. They might perform evaluations, consult with families, monitor development, order medical tests, and prescribe medicines.
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Neonatologist or Neonatal Nurse
A neonatalogist is an expert in caring for newborn babies, especially newborn babies who are preterm or have an illness. They may perform assessments, provide direct medical care, order tests, make developmental plans, and prescribe medicines.
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General Pediatrician or General Pediatric Nurse Practitioner
A general pediatrician is an expert in children's bodies and health. They may perform evaluations, monitor development, consult with families, order medical tests, refer families to services, and prescribe medicines.
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Speech and Language Pathologist
A speech and language pathologist is an expert in how people communicate, use and understand language, and use their mouths to eat and swallow. They may perform language evaluations, offer speech and language therapy, do swallow studies, and help with feeding.
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Physical Therapist
A physical therapist is an expert in how the body moves and how the body recovers after illness or injury. They may perform assessments, and provide therapy to help with movement, strength, flexibility, balance, and coordination.
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Occupational Therapist
An occupational therapist is an expert in how to help people participate fully in their daily lives. They may perform assessments, offer inpatient or outpatient therapy, and help people with fine motor skills, daily living skills, play skills, self-awareness, and emotion regulation.
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Dietician
A dietician is an expert in how people need to eat in order to stay healthy. They may help with feeding and weight gain, working with other clinicians and families.
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Cardiac Surgeon
A cardiac surgeon is an expert in repairing the heart. As part of a CNP team, they may advocate for strategies to protect the brain, monitor developmental outcomes, and educate their peers.
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Psychiatrist or Psychiatric Nurse
A psychiatrist is an expert in how the brain works and how it affects mental health. They may perform evaluations, consult with families, offer therapy, and prescribe medicines.
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Cardiovascular Geneticist
A cardiovascular geneticist is an expert in how genes can affect the development and health of the heart. They may perform genetic tests, do genetic consultations, monitor development, order medical tests, and prescribe medicines.
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Program Coordinater and Administrative Assistant
A program coordinator is an expert in management and organization of a team. They may answer the phone, respond to emails, schedule appointments, manage schedules, and organize billing.
Explore development at every age and stage
Heart defects can affect development from before birth into adulthood. At each age, young people face fresh challenges and opportunities. We invite you to explore our family guides, each one focusing on a different stage of development. They will help you to know what to expect, what to look for, and what you can do to help your loved one develop as well as they can.
Want to Learn More?
We invite you to explore the resources below, visit one of our custom guides, or search resources by topic.
Don't see what you're looking for? Let us know! We want to respond to the community's interests and needs. Email CNPschedulingandquestions@childrens.harvard.edu and tell us what you would like to learn about. We will try to add content to meet your needs.