Cardiac neurodevelopmental program

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Undergoing complex heart surgery as an infant or toddler could cause your child to experience physical, cognitive and/or socioemotional development delays. We’re here to help identify your child’s strengths and weaknesses, and support them throughout childhood so they can reach their full potential and optimize their quality of life.

What is the cardiac neurodevelopmental program?

As medical and surgical advances in the care for children with congenital heart disease have continued to improve over the last several decades, we’ve shifted our focus of care. Not only are we committed to providing the best medical and surgical care to infants and toddlers when they’re critically ill, but we’re also here to focus on providing the best possible long-term outcomes to improve and maximize their long-term quality of life.

Research has shown that children with complex congenital heart defects have a greater risk for developmental delays, decreased school performance, attention and behavioral issues, and psychological challenges compared to children without heart disease.

That’s why we partner with your family to optimize your child’s development and learning potential from the moment they enter into our care in the intensive care unit. And we’ll continue to assess and reassess the need for early interventions and supportive services to optimize their developmental care plan as they continue to grow and thrive throughout their childhood into adulthood.

Why choose the cardiac neurodevelopmental program?

As a national leader, Advocate Children’s Hospital adopted one of the first cardiac neurodevelopmental programs in the country. In addition, we're a founding member of the Cardiac Neurodevelopmental Outcomes Collaborative.

We’re constantly evolving our care strategies to meet the unique challenges of treating heart conditions and ideally optimizing your child’s developmental, cognitive, psychological and emotional health.

Our goal is to provide you and your child with the resources they need to thrive and succeed in life. We’ll partner with you to assess your child’s development, and provide early intervention and resource supports if needed. We’ll also continually assess their development and make recommendations to improve areas of their life including feeding and nutritional state, motor development, language development, cognition, and psychological and emotional health.

Conditions we treat

Our goal with the cardiac neurodevelopmental program is to provide early detection, early intervention, and comprehensive resources to minimize or eliminate conditions that patients with complex congenital heart disease commonly face.

These conditions could include:

Delayed motor milestones in infancy and early childhood
Difficulties eating
Speech delays or impairment
Academic difficulties, such as problems with math, reading and writing
Issues with task management including attention deficit and hyperactivity concerns
Behavioral concerns across the spectrum
Emotional concerns, such as anxiety and depression
Problems getting along with family, friends and classmates and developing interpersonal relationships
Self-esteem and impaired quality of life perceptions

Our cardiac neurodevelopmental services

We’re here to provide cardiac neurodevelopmental services from the moment your child is born. Our team of developmental therapists provide pre-surgical assessments to establish baseline functioning. We’ll partner with you to navigate this stressful time for you and your family, and we’ll foster neuroprotective care throughout the entire hospital stay.

As your child recovers from surgery, we’ll be there right by their side providing care, including safe feeding progression, optimum nutrition and intentional motor developmental care plans. When it’s time for your child to go home, we’ll provide you with resources to ensure their developmental needs continue to be addressed.

Our outpatient clinical programs are customized as your child gets older to ensure we’re meeting their changing needs.

The most critical developmental period is in the first three years of life. That’s why we offer evaluations every six-12 months in our Cardiac Neurodevelopmental Clinic for newborns through age 3.

To get started, we’ll do a pre-clinic phone interview to gather pertinent historical information about your child’s health. We’ll also ask you to complete standardized questionnaires either prior to or during the clinic session.

During these 90-minute sessions, you will likely meet with a medical practitioner, nurse coordinator, physical therapist, occupational therapist, speech therapist, education liaison and audiologist.

Our multidisciplinary team’s assessment will include:

Objective assessment of motor skills, sensory integration, cognition and language skills
Hearing evaluations
Parental screening assessing risks for depression, anxiety and stress coping skills

After the session, we’ll put together a comprehensive summary with recommendations on next steps such as:

Suggestions for developmentally appropriate activities to intentionally incorporate into your child’s daily activities
Referrals to early intervention programs for ongoing therapy at home or on-site as needed
Psychological and emotional support to the family
Preparations for preschool as your child approaches age 3

When your child reaches ages 5 and 6, we’re here with our School Age Readiness Clinic to help them prepare for their formative educational years.

We’ll conduct a pre-clinic phone interview to gather pertinent information about your child’s health as well as their performance at school. We’ll also request a copy of your child’s individual education plan (IEP) from their school if available, and ask you to complete online surveys about your child’s behavior and functional skills.

There will be two sessions for a total of four hours. Your child will meet one-on-one with a psychologist, nurse coordinator, speech therapist and education specialist. These sessions will include assessments of:

Cognitive development and intelligence
Language skills
School readiness
Visual motor, visual-spatial and fine motor skills
Interpersonal and reciprocal social skills

In addition, we’ll screen family members for depression, anxiety and stress coping skills as well as quality-of-life measures.

After the session, we’ll put together a comprehensive summary with recommendations on next steps such as:

Suggestions for education needs and modifications for your child’s school to implement
Medical or psychological referral suggestions as needed
Psychological and emotional support for the family

For children ages 8-18, we’ll offer ongoing neuropsychological, language and socioemotional evaluations. These evaluations will take place every three to five years in our Cardiac Neurocognitive Clinic.

We’ll begin with a pre-clinic phone interview to gather pertinent information about your child’s health as well as their performance at school. We’ll also request a copy of your child’s Individual Education Plan (IEP) from their school, if applicable, and ask you to complete online surveys about your child’s behavior and functional skills.

During the sessions, your child will meet one-on-one with a neuropsychologist, nurse coordinator and education specialist.

These sessions will include assessments of:

Cognitive development and intelligence
Visual motor, visual-spatial and fine motor skills
Memory and executive functioning skills including cognitive flexibility, planning and organization
Quality-of-life measures
Risks for depression, anxiety, and stress coping skills

In addition, we’ll screen family members for depression, anxiety and stress coping skills as well as quality-of-life measures.

After the session, we’ll put together a comprehensive summary with recommendations on next steps such as:

Suggestions for education needs and modifications for your child’s school to implement
Medical or psychological referrals suggestions as needed
Psychological and emotional support for the family
Transition plan into adulthood

Meet our cardiac neurodevelopment team.