Advances in technology and medical care have dramatically improved survival for infants born prior to 30 weeks gestation and weighing less than three pounds. However, up to 50 percent of these infants may develop physical, cognitive, language and/or behavioral impairments that require extensive health care, educational and psychosocial community resources through adulthood. At this time, there is no reliable method to identify those infants who will go on to develop impairments and those who will not.
Women & Infants Hospital has earned a five-year, $3 million grant from the National Institute of Health’s National Institute of Child Health and Human Development to determine the efficacy of a neurobehavioral exam that may help to identify which infants are at greatest risk for developmental impairment. Barry M. Lester, PhD, director of the Brown Center for the Study of Children at Risk at Women & Infants Hospital of Rhode Island and The Warren Alpert Medical School of Brown University, is the principal investigator. Co-principal investigator is T. Michael O’Shea, MD, of Wake Forest University.
Dr. Lester and Edward Tronick, PhD, of the University of Massachusetts, Boston, have developed a neurobehavioral exam called the NNNS, or the NICU (neonatal intensive care unit) Network Neurobehavioral Scale. This exam provides a comprehensive assessment that profiles infant neurobehavior along dimensions that researchers believe will enable them to help identify which infants are at greatest risk for developmental impairment.
“The ability to identify which infants will or will not be developmentally impaired is the ‘holy grail’ that would usher in a new era of preventive intervention and improve the long term outcome of these fragile babies,” said Dr. Lester.
When infants are discharged from the NICU, many who have medical problems become developmentally impaired, while others do not. Likewise, some infants without medical problems become developmentally impaired, while others do not.
“The impairments that are suffered by these children are costly in many ways,” explained Dr. Lester. “There is significant emotional cost to the children themselves, their parents and families, including coping with continuous fear and the possibility of crises associated with the infant’s unpredictable medical course, extended hospitalizations, and uncertain neurodevelopmental and quality of life outcomes. In addition, time lost from work and other family activities combine to create an enormous burden on the family, their community, support networks, and society in general.”
Over a five year period, Dr. Lester and his team will study approximately 1,000 babies born less than 30 weeks gestation at six sites across the country, including at Women & Infants Hospital. These babies will be tested with the NNNS just before discharge from the NICU and then given a series of developmental tests when they are approximately two and one-half years old.
Dr. Lester said, “We will use information about the infants’ medical problems and profiles on the NNNS to predict which infants will be developmentally impaired at two and one-half years. If our predictions are accurate, we will be able to use our findings to help early intervention and follow-up programs in their care plans for the baby and to help counseling parents when the baby is discharged from the NICU. Parenting is a key factor in helping babies recover, so parenting will be a critical part of the intervention.”
“The long term goal here is prevention,” Dr. Lester continued. “If we can identify infants at greatest risk, then we can target interventions to reduce or eliminate later deficits, reduce the pool of infants who need services to only those at greatest risk, and effectively allocate limited resources.”
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