OSF Children's Hospital

Congenital Heart Neurodevelopmental Program

Taking exceptional congenital heart care to the next level

We understand children with complex congenital heart problems are at greater risk for neurodevelopmental concerns. Early identification and treatment ensure the best possible outcomes. We will partner with you and your child to develop an appropriate plan to help them in reaching their full potential.

How can the Congenital Heart Neurodevelopmental Program help your child? Children with complex congenital heart problems are at a greater risk for neurodevelopmental issues. Many of these children experience one or more deficits across a range of areas.

Our program can help with:

  • infant congenital heart patient with mother and specialist Developmental assessment to assist with school preparedness
  • School difficulties
  • Attention, behavioral and emotional problems
  • Problems with peer and family relationships
  • Concerns with executive functioning, such as task management and organization
  • Delayed fine and gross motor skills
  • Feeding problems in infants, toddlers and preschoolers
  • Community resources and support

Early identification of neurodevelopmental problems is important. This allows your child to get access to beneficial supports, laying the ground work for future success.

Insurance coverage

Most insurance plans cover the services provided during the visit. We will help you understand your costs before the appointment as each insurance plan is unique.

Our neurodevelopmental team

Our multidisciplinary team of providers perform comprehensive neurodevelopmental evaluations for children of all ages.

Your child’s team will include:

  • Three babies at congenital heart center Pediatric cardiologists
  • Pediatric cardiac advanced practice nurse
  • Neurodevelopmental pediatrician 
  • Pediatric neuropsychologist
  • Physical therapist
  • Occupational therapist
  • Speech and feeding therapist
  • Social worker
  • Neurodevelopment coordinator

Follow-up services

Our neurodevelopmental coordinator and social worker will assist in coordinating follow-up care closer to home based on recommendations from the team.

These recommendations may include:

Your child’s visit

baby with mother and physician

This is a thorough and comprehensive evaluation. Expect your child’s visit to last approximately five hours. Some families have found it helpful to bring snacks, drinks, toys or books to occupy their children during the appointment.

During the visit, each member of the team will assess your child. Our team will meet together at the end of the assessments and develop a unique plan specifically for your child. This plan will be shared with you at the end of the clinic visit along with recommended  follow-up services.

As a result of your clinic visit, the team may advise partnering with your child’s school.

With your written permission, the neurodevelopmental coordinator will assist you in communicating your child’s needs to their school. We can also help your child’s teachers better understand their medical status and learning needs.