19: Follow-Up of High-Risk Infants

INTRODUCTION

Whenever an infant requires neonatal intensive care, concerns about survival are followed by concerns about the infant's quality of life. Follow-up clinics are a necessary adjunct to neonatal intensive care because they provide feedback regarding the child's ongoing health and development to families, pediatricians, neonatologists, and obstetricians. For families, neonatal intensive care unit (NICU) follow-up clinics provide the support and advice they need following NICU discharge.

I. GOALS OF A NEONATAL FOLLOW-UP CLINIC

1. Early identification of neurodevelopmental disability. These infants need comprehensive neurodevelopmental evaluations and appropriate community services.

2. Assessment of a child's need for early interventions. Although NICUs refer many infants directly to community early intervention programs, children's needs change with neuromaturation, requiring periodic review.

3. Parent counseling. Reassurance that their child is making good neurodevelopmental progress is always welcome, as this is a time of high anxiety for parents. Parents of children with developmental delay need realistic information about its significance, and advice about needed evaluations and interventions. Parents need to know as soon as possible if their child is demonstrating signs of neurodevelopmental impairment. A comprehensive evaluation can provide them with essential information. Physical and occupational therapists provide valuable suggestions regarding positioning, handling, and feeding infants. Even if their infant does well, parents of high-risk infants should be warned about early signs of school or behavior problems.

4. Identification and treatment of medical complications that were not recognized or anticipated at the time of discharge from the NICU.

5. Referral for comprehensive evaluations and community services as indicated.

6. Feedback for neonatologists, pediatricians, obstetricians, pediatric surgeons, and others regarding neurodevelopmental outcomes, ongoing medical problems, and unusual or unforeseen complications in these infants is essential.

II. STAFF OF THE NEONATAL FOLLOW-UP CLINIC

Pediatricians, neurodevelopmental pediatricians, and neonatologists make up the regular staff of the clinic, and many clinics include neuropsychologists and physical, occupational, and/or speech and language therapists. In addition, some infants may need referrals to audiologists, ophthalmologists, neuropsychologists, social workers, respiratory therapists, nutritionists, gastroenterologists, orthopedic surgeons, or other subspecialists.

III. RISK FACTORS FOR DEVELOPMENTAL DISABILITY

It is virtually impossible to diagnose developmental disability with certainty in the neonatal period, but a number of perinatal risk factors have been identified for selecting high-risk infants for close follow-up.

1. Preterm birth. The risks of cerebral palsy and intellectual disability increase with decreasing gestational age. Risk of disability, especially cognitive impairments, is highest in survivors born at the limit of viability (at or before 25 weeks' gestation). Children born preterm have higher rates of language disorders, visual perception problems, minor neuromotor dysfunction, attention deficits, executive dysfunction, and learning disabilities than full-term controls. Although most do well, children born at 33–36 weeks' gestation have higher rates of cognitive impairments, cerebral palsy, and school problems than children born full term. Besides gestational age, predictors of neurodevelopmental disability include poor growth (especially head growth), asphyxia, sepsis (especially meningitis), chronic lung ...