Frequently Asked Questions
Q. What is the Cardiac Neurodevelopmental Outcomes Clinic (CNOC)?
A. The CNOC is designed to assist families with follow-up care for infants and young children who are at risk for developmental and neurological problems following discharge from the hospital following cardiac surgery. We provide ongoing evaluation of the growth and development of these high-risk infants and young children, coordinate care with your infant’s pediatrician, and recommend referrals to specialty services and clinics when needed.
Q. Why does the Clinic exist?
A. The purpose of this clinic is to ensure the health and developmental well-being of patients with congenital heart defects by working with your cardiologist and pediatrician to provide optimal screening and follow-up referrals. California Children’s Services (CCS), a state medical program created to treat children with physically handicapping conditions, mandates that all hospitals with level III neonatal intensive care units (NICUs) provide a means to assess and follow their high-risk infants (including those with congenital heart defects) after discharge. We are here to work with your pediatrician and cardiologist to provide optimal screening and follow-up referrals.
Q. Who are the staff involved in the Clinic?
A. The staff are:
- Brian Fagan, M.D., Medical Director
- Heather Sun, M.D., Medical Director
- Kristin Gist, M.S, Senior Director, Developmental Services
- Elizabeth Valles, Certified Pediatric Nurse Practitioner
- Rebecca Sox, Certified Pediatric Nurse Practitioner
- Roxie Farjadi, Administrative Coordinator
- Haven Qualman, M.A., CCC-SLP, BCS-S, Manager
Q. What specific risk factors place an infant or child at risk for developmental and/or neurological problems?
A. CCS mandates follow-up for certain at-risk infants, including those who:
- Had a gestational age at birth of less than 32 weeks
- Had a birth weight less or equal to 1,500 grams
- Had cardiorespiratory depression at birth
- Had an Apgar score of less than or equal to 3 at five minutes
- Had prolonged hypoxia, acidemia, hypoglycemia and/or hypotension requiring pressor support
- Had persistent apnea that required medication (e.g., caffeine) for the treatment of apnea at discharge
- Required oxygen for more than 28 days of hospital stay and diagnosed with chronic lung disease
- Required ECMO
- Received inhaled nitric oxide
- Had or have documented seizure activity
- Had or have documented brain injury or intracranial pathology
- Had or have other problems that could result in neurologic abnormalities
- Have congenital heart defect requiring surgery
Q. How many visits can my child receive?
A. Your infant or child can be seen up to three times in our clinic before the age of 3. For any additional follow-up needs, your child can be seen at Rady Children’s Developmental Evaluation Clinic.
Q. At what age is my child seen?
A. Infants are usually seen at about 6 months, 12 -18 months, and one last visit after the age of 2 (use adjusted age if infant was born prematurely).
Q. How can my child be referred to the Clinic?
A. After your child is discharged from the Hospital you can start the process by calling us at 858-966-8801. Your pediatrician may also refer your infant or young child to us.
Q. What happens during a neurodevelopmental visit?
- The visit takes approximately 1 ½ to 2 hours. The child and family are seen by a nurse practitioner. She will gather information about your child’s health history since discharge or the last CNO Clinic 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. The Bayley Scales of Infant and Toddler Development/Screening Test, 3rd Edition is used to identify risk for developmental delay.
- The Amiel-Tison Neuromuscular Examis used to evaluate muscle tone, range of motion and reflexes.
- The REEL-3 uses parent/guardian report to evaluate your infant or child’s language skills (as needed).
- The M-CHAT is a screening tool for toddlers between the ages of 16 and 30 months to assess risk for autism spectrum disorders.
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 pediatrician and cardiologist.
Q. Where will you refer my infant or child if there are concerns for delay?
A. We may recommend referrals to specialists, California Early Start or 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 the child’s pediatrician and health plan to obtain it.