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By the time extremely low birthweight babies reach adolescence, their parents have adjusted fairly well to work and family life

Extremely low birthweight (ELBW) infants (2.2 lbs or less), who usually are very premature, typically suffer from neurodevelopmental problems, ill health, and recurrent hospitalizations in infancy compared with children born at term. Later, they often develop cognitive deficits, school problems, and behavioral difficulties, which are burdensome and stressful for parents. But by the time these children reach adolescence, their parents have adjusted fairly well to their work and family life, according to a study supported by the Agency for Health Care Research and Quality (HS08385). This is not to minimize the difficulties experienced earlier by parents of ELBW children, many of whom still feel that it has taken a significant toll on their emotional health, explain the Canadian researchers who conducted the study.

Using a questionnaire, they asked parents about the impact of the disabilities of ELBW children born between 1977 and 1982 in Ontario; at the time of interview the children were between 12 and 16 years of age. Parents of 145 ELBW survivors and parents of 123 term children (controls) completed the questionnaire. A significantly higher proportion of ELBW parents felt that their child's health had influenced their own emotional health (21 vs. 10 percent of parents of control children) and that there were other negative effects on the family.

The impact of ELBW children on the marriage was mixed. Far more parents of ELBW than control children reported that their child's health status had caused stresses and strains (14 vs. 6 percent), had brought the partners closer together (25 vs. 7 percent), and was a major factor in separation and divorce (4 vs. 0 percent). ELBW children also had a more negative impact than control children on siblings, primarily because of less parental attention (14 vs. 4 percent).

Despite these problems, 68 percent of parents of ELBW children and 58 percent of parents of controls said they supported saving all infants of borderline viability. Also, 98 percent of parents of ELBW children and 97 percent of parents of controls believed that parents should make the final decision about life-saving measures for such infants.

More details are in "Impact of extreme prematurity on families of adolescent children," by Saroj Saigal, M.D., F.R.C.P., Elizabeth Burrows, M.B.A., Barbara L. Stoskopf, R.N., M.H.Sc., and others, in the November 2000 Journal of Pediatrics 137, pp. 701-706.

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