Over the past half century, important advances in obstetric and neonatal intensive care have led to dramatic reductions in neonatal mortality at all gestational ages. However, prematurity remains a significant problem, and is associated with both mortality and important morbidities. According to the March of Dimes Report Card, 9.6% of children born in the United States in 2015 were preterm, or born at less than 37 weeks’ gestation. In addition, perinatal events in full-term infants can also be associated with adverse outcomes. Children who are premature or critically ill at birth can have poor long-term medical outcomes as well as poor developmental and functional outcomes. This chapter addresses how and when to assess developmental outcomes of high-risk children, reviews the associations between specific risk factors and developmental outcomes, and finally briefly addresses future directions for the long term follow-up of high risk newborns.
IDENTIFYING THE HIGH-RISK INFANT
Infants who are anticipated to be at high risk for developmental problems require close surveillance for developmental problems during the first few years of life. The American Academy of Pediatrics has defined high-risk infants as those infants who fall into 1 of 4 categories: “(1) the preterm infant; (2) the infant with special health care needs or dependence on technology; (3) the infant at risk because of family issues; and (4) the infant with anticipated early death.” Such infants should be identified at the time of hospital discharge. Depending on the complexity of the child’s medical needs, discharge planning should include a plan for ongoing management of medical problems; appointments with a primary care physician, developmental follow-up program, and any necessary medical specialists; identification of necessary home support services including home care or home nursing; and comprehensive education of the parents. Appropriate family counseling should be provided for as many caregivers as possible, and should include guidance for optimal medical and developmental care of the infant. In some situations, the follow-up program can also include care coordination and primary care in addition to addressing developmental needs. While there is evidence that such “medical homes” decrease resource utilization among children with complex medical conditions, the practicalities of setting up such programs have led to infrequent adoption of this model. Though all children with risk factors for developmental problems should be referred for routine surveillance at the time of hospital discharge, some are missed and some do not come immediately to attention. Therefore, it is essential for the general pediatrician or general practitioner to also provide basic screening in order to identify young children who may have delays and then to refer them for comprehensive evaluations.
ASSESSING DEVELOPMENTAL OUTCOMES
Developmental outcomes evolve over the first several years of life. While some developmental outcomes can be measured in young infants, many important outcomes cannot be measured until school age. In general, surveillance should include multiple domains: motor, cognitive, language, behavior, and ...