Helping Children Develop to Their Full Potential

The Neonatal Follow-up Program, or NFP, is designed for infants who have spent time in a newborn intensive care nursery. These children may be at a higher risk for developmental concerns, especially if very small, born very early, or very ill. Regardless of how the infant/child appears to be doing, any child meeting the eligibility requirement or having developmental concerns is strongly encouraged to attend.

Recommended eligibility for children at the highest risk include:

  • Birthweight < 1250 grams (< 2 lbs, 12 oz)
  • Gestational Age < 26 weeks
  • ECMO support required
  • Diagnosis of hypoxic ischemic encephalopathy (HIE)
  • Referral from medical care provider

Infants are referred by all newborn intensive care units throughout the state of Utah or their medical care provider.

Infants/children are seen at the following adjusted ages:

  • 3 months, 9 months, 18 months,
  • 2 years, 3 years, and 4 years

Your child will meet with one or more members of our multidisciplinary developmental team:

  • Developmental Pediatrics
  • Speech and Language Pathology
  • Occupational Therapy
  • Physical Therapy
  • Family Support through Family Voices
  • Psychology
 

Quality Improvement

Early Detection of Cerebral Palsy in High-Risk Infants

Cerebral palsy is the most common physical disability in childhood worldwide. It is a neurological disorder affecting a person’s movement and posture and is caused by a non-progressive brain injury or malformation before, during, or after birth. Currently the average age for diagnosis of cerebral palsy is 24 months age or older. Delays in diagnosis of cerebral palsy are associated with worse long-term function and participation, parental dissatisfactions and higher rates of mental health conditions¹.

 Our Neonatal Follow-up Program, along with 3 other universities, has partnered with the Cerebral Palsy Foundation and Nationwide Children’s Hospital to work together on decreasing the age of diagnosis of cerebral palsy.

Learn more about the EARLY DETECTION INITIATIVE

WHY is it important to diagnose cerebral palsy early?

In the first year of life, the brain is growing rapidly and has more ability to adapt its function and create new connections. Early diagnosis of cerebral palsy allows children to receive therapeutic interventions to maximize their potential when brain plasticity is at its highest. This is called optimizing neuroplasticity.

Learn more about OPTIMIZING NEUROPLASTICITY

HOW is cerebral palsy being diagnosed earlier?

We are implementing evidence-based tools that can facilitate an earlier diagnosis of cerebral palsy. This includes the General Movements Assessment and the Hammersmith Infant Neurological Exam. When combined with patient history and neuroimaging, these tools help to decrease the age of diagnosis of cerebral palsy. These assessments may start while your child is still in the Newborn Intensive Care Unit and continue at the Neonatal Follow-up Program.

Learn more about the GENERAL MOVEMENTS ASSESSMENT

Learn more about the HAMMERSMITH INFANT NEUROLOGICAL EXAM

WHAT kind of support is available to families after a diagnosis of cerebral palsy?

Early diagnosis also provides opportunities for improved parent education and support. Receiving a diagnosis of cerebral palsy can be very overwhelming to parents and loved ones. There are resources available that provide education and guidance on where to begin and how you can best help your child. Many families have found the Cerebral Palsy Toolkit helpful in their navigation of this new diagnosis. The cerebral palsy toolkit is a book, or rather a manual, that is written by parents, for parents. There are many other great books for adults and children that can be valuable.

CEREBRAL PALSY TOOLKIT

Utah Family Voices is a group of parents of children with special needs that support other parents that have a child or family member with a physical, mental or developmental special need. They can help provide a valuable support system, resources and materials that support families. Their services are free of charge.

UTAH FAMILY VOICES

 

¹Implementation of Early Diagnosis and Intervention Guidelines for Cerebral Palsy in a High-Risk Infant Follow-Up Clinic
Byrne, Rachel et al.
Pediatric Neurology, Volume 76, 66 - 71

 

FREQUENTLY ASKED QUESTIONS

I AM NOT SURE MY INFANT IS ELIGIBLE OR WAS REFERRED BY THE NICU

If you have concerns that your infant was not referred or you feel your infant should be in the NFP, please contact us at 801-585-2209. We will want to obtain your infants hospital discharge summary for review. You can also talk to your infant’s pediatrician/primary care provider and they can send us a referral through our secured fax line at 801-585-2209.

HOW DO I MAKE MY FIRST APPOINTMENT FOR NFP?

One of our schedulers will contact you for your first appointment which will be near your infants three month (adjusted age) time period. If we have not contacted you by the time your infant is near this age, PLEASE call our clinic at 801-587-2255.

WHERE ARE THE CLINICS LOCATED?

Our Salt Lake clinic is located in the Primary Children’s Eccles Outpatient Building at 81 N Mario Capecchi Dr., Salt Lake City, UT, 84113.

Our Provo clinic is located at the Utah County Health Department and Justice Building at 151 S. University Ave, Suite 1610.

 HOW MUCH WILL NPF COST US?

Your insurance company will be billed for these services although you will NOT receive a bill for services. You will NOT be responsible for any amount of charges your insurance does not cover. We are very committed to the developmental outcomes of the NICU babies and will provide these services regardless of insurance coverage, or lack of it.

WE HAVE MISSED SOME OF THE NFP VISITS BUT STILL WANT TO ATTEND OTHERS. CAN WE STILL COME TO NFP?

Yes! Although we believe each visit is very important, you can come to any visits even if you have missed some.

SHOULD I COME TO NFP IF MY CHILD IS DOING WELL AND DOES NOT APPEAR TO HAVE ANY DEVELOPMENTAL CONCERNS?

Yes! We are interested in following your child regardless of how he/she is doing. We also want to make sure you have the best developmental care for your child we can provide.

WHAT HAPPENS IF MY CHILD HAS DEVELOPMENTAL PROBLEMS?

If there is any concern about your child’s development, we may encourage further testing in NFP or in our Child Developmental Program or another clinic that may be able to provide you with services. We can also refer you to programs that may help your child.

WHAT CAN I EXPECT AT EACH VISIT?

You will see two or more developmental professionals at each visit. We provide assessments according to your child’s age.

HOW LONG WILL MY APPOINTMENTS BE?

Please plan to be at the clinic for up to three hours. You can bring food for your child. Our Salt Lake clinic has a café if you need to purchase food or drinks. Appointments typically start at 8:30 or 9AM.

WHAT ARE TRANSPORTATION OPTIONS NEAR THE CLINIC?

The University Medical Center Trax Station is right next to the Primary Children’s Eccles Outpatient Building. The building also provides underground parking and valet parking.

I'M CONCERNED ABOUT A SPECIFIC PROBLEM(S) (SUCH AS CEREBRAL PALSEY, AUTISM, ADHD, OR LEARNING DISABILITY). CAN I JUST GET TESTED FOR THAT?

In addition to providing standard testing we will address any specific questions or concerns you have. Please let the developmental team know what concerns you most. We may encourage further testing in NFP or in our Child Developmental Program or another clinic that may be able to provide you with services. We can also refer you to programs that may help your child and can give you information on services in your community.

HOW DOES MY CHILD'S PEDIATRICIAN AND THEIR SCHOOL GET THIS INFORMATION?

The clinic will send the pediatrician or other primary care provider a summary of the visit and test results.

 

 

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