Developmental Care for Children with Congenital Heart Disease

The Heart Center Neurodevelopmental Program (HCNP) brings together a team of specialist from different areas to provide developmental care for patients and families living with congenital heart disease. This program is jointly run by the Primary Children’s Heart Center and the University Developmental Assessment Clinics.

Our team includes specialists from these areas:

  • Cardiology
  • Developmental pediatrics
  • Psychology
  • Physical therapy
  • Occupational therapy
  • Speech and language pathology
  • Registered nurses and medical assistants

Our team provides developmental assessments at four key stages of your child’s age:

  • Six to 12 months
  • Eighteen to 36 months
  • Four to six years
  • Eight to 12 years

We’ll contact you before your visit to complete some checklists and paperwork. After the evaluation, we’ll summarize the results. Then we’ll share them with your child’s pediatrician and/or cardiologist—and with you.

If your child is in the hospital as a newborn, our developmental care team provides formal testing there too. We also provide one-on-one consultations and recommendations specifically for infants.

Partnering With Primary Care Providers (PCP)s

Providers at the HCNP do not replace your child’s primary care provider (PCP). We work in partnership with your child’s PCP. We share all the documentation from our assessments with your child’s PCP so that we can work as a team to support your child’s development.

Why Is My Child Being Seen in the HCNP Clinic?

The American Heart Association (AHA) recommends that all high-risk children with congenital heart disease have neurodevelopmental evaluations. HCNP offers evaluations for infants in the hospital. We also offer clinic visits for children between six months and 13 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.

Scheduling an Appointment for Your Child

Your child will be automatically referred to the HCNP Clinic. The surgical team present at the time of your baby’s first surgery will do this. We also accept referrals at any time  from your child’s cardiologist or cardiology team.

If you feel your child meets criteria and has not been referred, please contact your child’s cardiologist or PCP. They can refer your child to the HCNP by using our secured FAX at 801-585-2209 or through their (EPIC or iCentra) electronic medical record.

School Assessments

If your child has previously received testing, we strongly recommend that you share the results with the HCNP before your visit. This is vital for many reasons, 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 HCNP to fine tune the assessment to your child's profile for a better overall assessment. Send any previous testing results securely by fax or email to the HCNP:

Fax: 801-585-2209

Email: udac@hsc.utah.edu

Provider Recommendations

The providers at the HCNP will make recommendations based on the results of the clinic evaluations. You can access developmental services in a variety of ways; they are tailored to each child and family's needs.

We can also provide you with resources in your community ranging from parenting classes to adaptive sports teams. Finally, if your child needs comprehensive outpatient therapy, we will make the appropriate referrals and help you to access those services.

Resources

Cost for Program Services

Although we will bill your insurance company (if you have insurance or Medicaid), you will never receive a bill for these services. There are no out of pocket expenses for these services.

We are very committed to the developmental outcomes of children with congenital heart disease and provide these services regardless of insurance coverage, or lack of it.

Find a Heart Center Specialist

Questions? Contact Us

Please, do not hesitate to call the HCNP with any questions. Andrea Smith is a cardiology nurse and the HCNP coordinator. Phone her at at 801-213-1594 or email at andrea.smith@hsc.utah.edu