Neurodevelopmental Follow-Up Clinic for Congenital Heart Patients

Research shows that children who undergo cardiac surgery during the first year of life are at higher risk for developmental, learning, and/or behavioral concerns later in life. Continued evaluation for these children is highly recommended to ensure early identification of difficulties.
The C.S. Mott Children’s Hospital Congenital Heart Center Neurodevelopmental Follow-Up Program offers a complete developmental assessment and referral program for children from infancy through age 18 years who have had heart surgery prior to one year of age. 
Our program assists families in the early identification and continuous monitoring of concerns across a wide range of developmental areas, including:
  • delayed fine and gross motor skills
  • difficulties with speech and/or language 
  • feeding problems in infants, toddlers, and pre-school age children
  • attention, behavioral and emotional problems
  • problems getting along with friends and family
  • school preparedness and difficulties, such as problems with reading, writing, and math
  • issues with task management and/or organization
Identifying developmental delays as early as possible allows us to provide intervention and support for children while they are young, and builds a solid foundation for later learning and future development. Our program begins in infancy with evaluations at multiple touch points through to high school age. 

Neurodevelopmental Follow-Up Process

You and your child will have access to ongoing neurodevelopmental care as your child grows and develops over time.  Our approach ensures that every child receives evaluation and management at each stage of development.

For children 0-4 years old

  • Infants and toddlers are scheduled for an assessment to evaluate development and provide recommendations and referrals if needed. 
  • First you will be asked to complete questionnaires ahead of your appointment to provide a brief introduction to how your child is doing.  We will review these questionnaires at the beginning of the appointment and will be able to assist you if you had any trouble understanding/answering any questions. 
  • We will then do play activities with your child to look at his/her problem solving, language, and physical movements. Children typically enjoy these play activities. For children age 12 months and younger, we will also perform a physical exam and neurological screening.  This gives us information about your child’s developmental strengths and weaknesses. After this assessment, you will receive feedback during the same appointment. 
  • You will also have an opportunity to meet with our social worker. If additional developmental services will be valuable to assist your child, the social worker will begin the process of identifying a program in your home area.

For children over 4 years old

School aged children are scheduled for a neuropsychological evaluation to assess cognitive, behavioral and emotional functioning. 
  • A typical neuropsychological evaluation includes a detailed developmental history and clinical interview with a neuropsychologist, observation of the child, as well as formal testing to identify the strengths and obstacles your child has for learning. 
  • Parents and teachers will also be asked to complete questionnaires to obtain a better understanding of the child’s functioning in different environments, including behavioral, emotional, and social skills. 
  • Results from the evaluation will be reviewed with you a few weeks following completion of the evaluation. At that time we will help provide more information regarding your child’s functioning and will help to determine if additional treatments and/or interventions would be beneficial. 

Our Neurodevelopmental Follow-Up Team

Our multidisciplinary team provides comprehensive neurodevelopmental evaluation and provides families with surveillance, screening, evaluation, and treatment resources needed to ensure the best outcome possible for your child. 

Your child’s team of experts will include:

  • Pediatric psychologists and neuropsychologists 
  • Pediatric advanced practice nurse 
  • Pediatric cardiologists 
  • Social workers  
We also work in close collaboration with other pediatric specialists on an as needed basis, including, but not limited to: 
  • Neurologists 
  • Occupational and physical therapists 
  • Speech and language pathologists
  • Behavioral pediatricians and feeding experts
  • Pediatric gastroenterologists
  • Child life specialists

C.S. Mott Children’s Hospital is a member of the Cardiac Neurodevelopmental Outcome Collaborative.

Take the next step:

To learn more about the Congenital Heart Center Neurodevelopmental Follow-Up Clinic, or to make an appointment, call 734-764-5176.

Go back to the Congenital Heart Overview Programs and Clinics page.