Chapter 21: 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. Neonatal intensive care follow-up clinics are a necessary adjunct to neonatal intensive care. They provide families with the support and advice they need following neonatal intensive care unit (NICU) discharge. They provide feedback regarding the child’s ongoing health and development to families, pediatricians, neonatologists, and obstetricians. Most important, to optimize neurodevelopmental outcomes, serial developmental assessments facilitate early diagnosis and referral for specific early interventions when neuroplasticity may be at its peak.

I. GOALS OF A NEONATAL FOLLOW-UP CLINIC

1. Early identification of neurodevelopmental disability. High-risk NICU infants need comprehensive neurodevelopmental evaluations and appropriate intervention services. There is a growing body of evidence suggesting that early detection can take advantage of periods of the most active neuroplasticity after brain injury. Neuroplasticity refers to the ability of the central nervous system (CNS) to change both structurally and functionally in response to experience and to adapt following injury. In the postnatal brain, there is a very active period of proliferation and pruning of synapses through neurogenesis and apoptosis. This period of neuroplasticity is most active during the first 3 years. An additional mechanism of brain plasticity in the developing child is activity-dependent shaping of neuronal circuits by experience or injury. There is growing evidence extracted from adult and animal literature that there is a finite period of injury-induced neuroplasticity where most recovery occurs. This will be missed without early identification and appropriate intervention services in high-risk infants.

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

3. Parent counseling. Reassurance that their child is making good neurodevelopmental progress is always welcome, as the anxiety of uncertainty is a heavy burden for parents. Parents of children with developmental delay need realistic information about its significance and whether it will lead to impairment. A comprehensive neurodevelopmental evaluation can provide parents with essential information and recommendations for how to promote their child’s neurodevelopment. 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 their child’s risk for and early indicators 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 (eg, hypertension, sleep problems).

5. Referral for comprehensive evaluations and 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 ...