Overview

Providing Developmental Care for Congenital Heart Disease Patients

Providing Developmental Care for Congenital Heart Disease Patients

The Heart Center Neurodevelopmental Program (HCNP) brings together a multidisciplinary team together to provide developmental care for patients and families living with congenital heart disease. Our team includes:

  • Cardiologists,
  • Developmental Pediatrics,
  • Psychology,
  • Physical Therapy
  • Occupational Therapy,
  • Speech and Language Pathology
  • Feeding Specialists.

The HCNP provides both inpatient and outpatient services at Primary Children's Hospital. The HCNP is supported by the clinicians from the University of Utah Health, Primary Children's Hospital, and Intermountain Healthcare.

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Frequently Asked Questions

Why is my child being seen in the HCNP Clinic?

The American Heart Association (AHA) recommends that all high-risk children are evaluated at 12-24 months, three-six years and nine-12 years. High risk children are those with cyanotic heart disease, open heart surgery as a newborn or other risk factors associated with congenital heart disease. Supporting Development in Children With Congenital Heart Disease

Are the HCNP clinic services covered by insurance?

Many of the services provided at HCNP clinic are covered by insurance. Regardless, for those services not covered, families or insurance holders are not balanced billed. Therefore, you should never receive a medical bill from the HCNP clinic.

How often will we be coming to HCNP Clinic?

Children are evaluated at four time frames. The first time is just after the child is born, often this happens in the ICU. This is a gentle test of how the baby responds to being comforted and held. The second visit is at 18-24 months and evaluates how the child solves problems, motor skills, socializes, and communicates. The third visit is at around four years of age and evaluates school readiness, behaviors, and language. The final visit is at around 12 years of age which evaluates the child’s intellectual, age-level self-care skills, executive functioning (e.g., ADHD related), and academic abilities (i.e., learning disability related). In addition, the child and family reports on their quality of life using a questionnaire designed specifically for children with congenital heart conditions.

How do I get the results of the neurodevelopmental testing performed in the clinic?

Results of the Heart Center Neurodevelopment Program will arrive in the mail in a summary document around four-six weeks after your appointment. From each provider you saw at your visit there will be a summary of the most significant findings and recommendations. The only exception to this would be for psychology, who will provide a personal follow up appointment. This appointment can be done in person or via Telehealth (with testing finished the child does not have to be at this appointment). At this follow-up appointment, you and the psychologist will meet to cover a detailed report that will be written and provided to you. This report can be used in conjunction with school planning or other therapies you child may be seeking.

If my child has already received testing at school, how do I share the information with the HCNP staff?

It is strongly recommended that if your child has already received any previous testing that it be shared with the Heart Center Neurodevelopment program before your visit. This is vital for many reasons, among some of the biggest being that we do not want to repeat testing that has already been done with your child. Additionally, the testing information can allow the providers at the Heart Center Neurodevelopmental Program to fine tune the assessment to your child's profile for a better overall assessment. All previous testing can be sent securely faxed to the Heart Center Neurodevelopment Program at FAX 801-585-2209.

If a problem is identified, how do I get the services that my child needs?

The providers at the Heart Center Neurodevelopmental Program will make recommendations based on the results of the outpatient clinic evaluations. Developmental services can be accessed in a variety of ways and are tailored to each child and family's needs. Our clinic staff can help you access free school based services such as an individual education plan (IEP) to help a student be successful in the educational environment or a 504 plan which ensures that your child receives the learning accommodations at school. We can provide you with resources in your community ranging from parenting classes to adaptive sports teams. Finally, if comprehensive outpatient therapy services we will make the appropriate referrals and help you to access those services.

How does my child's pediatrician and their school get this information?

The clinic will send the pediatrician or other primary care provider and the pediatric cardiologist a summary of the visit and test results. It is up to the parents of the child to make a copy and give the results to the school.

Family Resources

Pediatrician Resources

Early and often neurodevelopmental care is important for all children with complex congenital heart disease. Please see the information below regarding follow up criteria for children with congenital heart disease.

Referrals can be sent to the University Developmental Assessment Clinics via FAX 801-585-2209, phone 801-587-2255 or email udac@hsc.utah.edu.