About This Center
The Cardiac Neurodevelopmental Follow-Up Clinic is a specialty program within UT Health Austin Pediatric Neurosciences at Dell Children’s, a clinical partnership between Dell Children’s Medical Center and UT Health Austin.
The Cardiac Neurodevelopmental Follow-Up Clinic tracks, monitors, and manages the development of children with congenital heart disease who undergo surgical intervention as infants. Children with complex congenital heart disease are at higher risk for neurodevelopmental disabilities than other children. This program detects and treats developmental delays with the goal of optimizing each child’s development. Developmental delays may include mild cognitive impairment, oral-motor discoordination, expressive speech, and language differences, impaired visual-spatial and visual-motor skills, attention-deficit/hyperactivity disorder (ADHD), learning disabilities, and more.
The Cardiac Neurodevelopmental Outcomes Program provides expert evaluation and diagnosis as well as integration of caregiver assessment in which families record and share their own observations about their child’s development. This allows for early intervention and care coordination between caregivers and experts across specialties to ensure you and your family are provided with the support you need.
The Cardiac Neurodevelopmental Follow-Up Clinic care team uses advanced imaging, neurological and neuropsychological testing, and the latest evidence-based therapies to monitor and treat any developmental delays your child may experience. Our team works with you and your family to ensure the best possible outcome for your child.
Children with complex congenital heart disease seem to have a slightly higher probability of developmental delays likely due to a combination of factors. Babies born with congenital heart disease have brains that develop and mature at slower rates in utero, and some babies with congenital heart disease have lower oxygen levels throughout their bodies. Children who have developmental delays identified early on, and therefore get early intervention in the form of therapy, do better than children who do not have their delays identified until they are school-aged. The Cardiac Neurodevelopmental Program follows guidelines set by the American Heart Association (AHA), American Academy of Pediatrics (AAP), and the Cardiac Neurodevelopmental Outcomes Collaborative (CNOC).
Evaluations are recommended for the following:
- Children with open heart surgery as a newborn/infant
- Children with a heart condition that causes decreased oxygen levels (e.g., cyanotic heart lesions)
- Children with a heart condition and an additional risk factor (e.g., prematurity, developmental delay, heart transplant)
The Cardiac Neurodevelopmental Follow-Up Clinic care team treats patients in both the inpatient and outpatient setting. During inpatient care, the entire Cardiac Neurodevelopmental Follow-Up Clinic care team rounds together and meets routinely to discuss how each patient is doing, what is going well, what needs additional attention, and what overall goals for the upcoming week should include. If a patient meets the program’s risk criteria, upon discharge, the patient continues outpatient care with a developmental neurologist and neuropsychologist for ongoing monitoring and evaluation.
Patients are cared for by a dedicated multidisciplinary care team, meaning your child will benefit from the expertise of multiple specialists across a variety of disciplines. Our board-certified and fellowship-trained pediatric neurologists have extensive experience developing strategies to optimize long-term neurodevelopmental outcomes. They work alongside a team of pediatric cardiac experts, including psychologists, nurses, advanced practice providers, speech therapists, social workers, child life specialists, dietitians, physical and occupational therapists, pharmacists, and more, providing unparalleled care for patients every step of the way.
Your child will undergo neurodevelopmental testing to evaluate their cognitive, language, and motor development as well as their social, emotional, and behavioral development. Your child will also attend a screening visit with a neurologist or a nurse practitioner who will conduct an exam to assess their mental status, speech, cranial nerves, muscle tone, motor skills, sensation, and reflexes. Your child’s provider will discuss your goals and concerns for your child with your child’s entire care team, and you will receive the test results and the care team’s treatment recommendations at the end of the appointment. If needed, referrals will be made for physical, occupational, speech, or behavioral therapy.
Before starting preschool or kindergarten, your child will undergo other neuropsychological evaluations. These evaluations will assess your child’s thinking skills, early academic knowledge, speech, motor skills, and early attention development as well as their social, emotional, and behavioral functioning. Any recommendations for promoting development and learning will be provided to you in a feedback appointment as well as in a written report that will be shared with your child’s cardiologist.
Your child will undergo additional neuropsychological evaluations at specific stages throughout their academic journey. These stages have been identified as pivotal transition periods with increased expectations in which children with heart disease are more likely to experience new difficulties. These transition periods often occur when children are entering third grade, before the start of middle school, before the start of high school, and before the transition to adulthood. Each evaluation is tailored to your child’s specific needs, but generally includes an evaluation of your child’s intellectual skills, speech, visual-spatial skills, learning and memory, attention, executive functioning (skills such as self-regulation, planning, and organization), academic skills, and motor skills as well as their social, emotional, and behavioral functioning. Any recommendations for promoting development and learning will be provided to you in a feedback appointment as well as in a written report that will be shared with your child’s cardiologist.