Study Examines Long-Term Effects of Extremely Low-Birthweight Births on Families

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Most parents of extremely low-birthweight (ELBW) children are able to successfully adjust to their work and family environment over time, reports a study published in the November issue of The Journal of Pediatrics.

The authors of the study used self-administered questionnaires to collect data from 268 parents of adolescent children who were ELBW infants or who had normal birthweights. The authors used these data to examine the effects of ELBW births on families by looking at the positive and negative effects of having an ELBW child and by assessing how these effects influence parents' attitudes about active treatment of infants of borderline viability.

The study found that a significant percentage of parents of ELBW children reported that their child's health had negatively affected their emotional health and that of their family. In addition, parents of ELBW children were more likely than other parents to be under stress and strain as a result of their child's health. The authors also reported that the ELBW child's health had a negative effect on siblings and that parents of ELBW children were less likely than other parents to have more children. A significant percentage of parents of ELBW children indicated that having an ELBW child had brought their family closer together.

In spite of the negative consequences of having an ELBW child, most parents who participated in the study believed that efforts should be made to save all ELBW children. They also felt that the parents should make the final decision about the child's treatment.

According to the authors, one possible study limitation is that the negative effects families experienced during the years immediately following their ELBW child's birth may have been underreported because of the long period of time that had elapsed. The authors also note, however, that the long time span may have helped parents reflect and provide more accurate data.

The authors recommend that parents and health professionals discuss whether or not to treat an ELBW child. They add that "in deliberation, which should occur from the earliest possible moment, all relevant facts should be provided, and the interests of the infants and the family should be taken into consideration at an individual level."

Saigal S, Burros E, Stoskep BL, et al. 2000. Impact of extreme prematurity on families of adolescent children. The Journal of Pediatrics 137(5):701-706.

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MCH Alert. 2001. Arlington, VA: National Center for Education in Maternal and Child Health. http://www.ncemch.org/alert.