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Frequently Asked Questions

Q. What is the Cardiac Neurodevelopmental Outcomes Clinic?

A. The CNOC is designed to assist families with follow-up care for young children through adulthood who are more likely to experience developmental, neurobehavioral and/or learning challenges due to their cardiac disease diagnosis.

We provide ongoing evaluation of the growth and development of your child and coordinate care with you, your child’s pediatrician & cardiologist to address concerns and recommend referrals for specialty services and clinics as needed. 

Q. Who are the staff involved in the clinic?

A. The staff are:

  • Brian Fagan, M.D., Medical Director
  • Elizabeth Valles, Certified Pediatric Nurse Practitioner
  • Ben Brenners, M.S.N., R.N., CNL, Manager, Business & Systems | Heart Institute
  • Gina Mautz R.N., R.N. Manager, Cardiology
  • Haven Qualman, M.A., CCC-SLP, BCS-S, Manager

Q. What criteria qualify my child for CNOC?

A. If your child has been diagnosed with congenital heart disease they should be seen for neurodevelopmental follow-up at regular intervals to minimize any challenges and to maximize their potential. CNOC focuses on identifying and providing resources to treat developmental and neurobehavioral risks for this special population.

Q. How often should my child be seen?

A.  After graduating from the Cardiac Neurodevelopmental Outcomes Clinic in HRIF at age three, your child will be seen annually in our clinic until transitioning to adult cardiac care. 

Q. At what age is my child seen?

Children will be seen starting at approximately 4 years old (following graduation from the CNOC in HRIF or CNOC in DEC program) and be followed through age 18 years old.

Q. How can my child be referred to the clinic?

A.  After your child is discharged from the CNOC in HRIF they will be referred. They can also be referred by their Cardiologist or Primary Care Provider.

Q. What happens during a neurodevelopmental visit?

A. The visit takes approximately one hour. The child and family are seen by a nurse practitioner. She will gather information about your child’s health history since discharge from the CNOC HRIF or the last CNOC visit. Next, she will evaluate your child using a developmental screening exam, followed by a physical exam, specifically looking for neuromuscular findings. You will be asked to report your child’s early language milestones. At the end of the exam, your child’s weight, height and head circumference will be measured. Finally, testing results and recommendations will be discussed.

Q. What tests are used?  

A. PEDSQL Cardiac, Functional Oral Intake Scale, PedsQL Cognitive Functioning and PedsQL Family Impact , ADHD Rating Scale IV, Social Communication Questionnaire, Pediatric Symptom Checklist-17, PHQ-9. 

Q. What happens after the visit?

A. Results are reviewed by the medical director and a copy of the visit report, including recommendations and follow-up, are sent to your child’s pediatrician and cardiologist.

Q. Where will you refer my infant or child if there are concerns for delay?

A. We may recommend referrals to various specialists including Developmental Services here at Rady Children’s or through another provider. Your child’s pediatrician will be involved in this process.

Q. Who pays for the visit?

A. Most insurance will cover the cost of a child’s appointment. If authorization is required, the team works with your child’s pediatrician and health plan to obtain it.