Today, thanks to the many advances in medical care, children with congenital
heart disease are living longer and well into adulthood. However, children
born with congenital heart disease are at risk for deficits in their growth
and development. These issues can affect multiple areas of development
including intelligence, academic achievement, motor skills, language,
psychosocial adjustment, attention and executive functioning, family stress
and transition to adulthood.
Our Heart Center is dedicated to providing comprehensive care to all our
patients, including monitoring and treatment for neurodevelopmental disabilities.
We provide easy access to screening for all our complex patients, with
direct involvement of neurodevelopmental pediatricians.
Our dedicated team offers a program to guide parents and children through
developmental challenges. We will monitor your child’s development
and coordinate with your pediatrician and other specialists at Children’s
to help make sure your child is reaching their normal developmental milestones.
What makes us different?
Our program is a member of the National Pediatric Cardiology Quality Improvement
Collaborative (NPC-QIC). As a member, we participate in research surrounding
the advancement of care for single ventricle patients. During the current
stage of the collaborative’s project, neurodevelopmental outcomes
are the primary focus of study.
Our program is working towards becoming a member of the Cardiac Neurodevelopmental
Outcome Collective (CNOC) with the assistance of our neurodevelopmental
pediatrician, Dr. Howell.
How the program works
Children who have had heart surgery may be referred to the Cardiac Neurodevelopmental
Program, either by their heart doctor or their primary care doctor.
When your child is referred to our program, we will:
Provide an initial consultation to screen your child and identify any neurodevelopmental issues
Offer standardized testing and scoring of motor development, cognitive
and language skills
Screen for hearing difficulties
Provide a nutritional assessment and counseling as needed
Parental support/guidance
Complete neurological exam
Put a plan in place to help your child meet their specific developmental
milestones
Recommend therapies for your child to help them reach their full potential
Meet with you regularly to monitor their progress and suggest additional
interventions as needed
Our goal is to bring together experts from across the hospital to examine
your child and offer a comprehensive plan for your child as they grow.
The team may include your cardiologist, a developmental behavioral pediatrician,
nurse practitioner, registered nurse, psychologist, nutritionist, social
worker, audiologist, physical therapist, occupational therapist or speech
therapist. This team will be customized for your child.
After your initial appointment, we will see your child every six months
for the first few years of life. After that, depending on their progress,
these appointments will be spaced out to fit your child’s specific
needs. Once they reach 18, we will work to transition them to our
Adult Congenital Heart Program.
