Experience of Families with Very Low Birthweight Children with Neurologic Sequelae

Abstract

To describe the quality of life for surviving very low birthweight (VLBW, <1.5 kg) children and their families, the authors interviewed the parents of 22 neurologically abnormal VLBW children, 3 to 7 years after their birth and compared them to the parents of 15 neurologically normal VLBW children. The infants were born between 1976 and 1979, (mean birthweight, 1.2 kg; mean gestational age, 30 weeks). They included three with spastic quadriplegia, 14 with spastic diplegia, and five with hydrocephalus. Eight children were not walking. Seven families rated their child's neurologic problem as severe, while 15 rated the problem as mild.

Neurologically abnormal children tended to display more screaming and crying than the normal children. Cost of ongoing medical care was a problem for families of nine neurologically abnormal as compared with two families of normal children. The abnormal children required a total of 61 postneonatal rehospitalizations versus 11 in the normal group. Families of neurologically abnormal children reported on significant major changes in their personal lives for the care of their child. Both groups of parents reported heightened appreciation of their child. Plans for future children were affected in both.

Parents identified an urgent need for better medical information, education of pediatricians regarding preterm development and neurologic sequelae, and better contact and support among parents themselves.