Families of infants born extremely preterm seem to fare well in the long run, even when their children have significant neurological impairments, researchers reported Monday.

In a study that followed 130 families of children born at extremely low weights, researchers found that by the time the children reached young adulthood, mothers reported no more family dysfunction or problems with their own mental or physical well-being than mothers of normal-birthweight children.

What’s more, among the low-birthweight families, mothers of children with neurological impairments - including cerebral palsy, mental retardation and blindness - generally reported less family dysfunction.

That is not to say that having an extremely premature infant is easy, said lead researcher Dr. Saroj Saigal of McMaster University in Hamilton, Ontario, Canada. But, she told Reuters Health, much of the stress for parents is in the early years, when they are not sure how their child will fare and are learning to manage any disabilities the child may have.

This study, Saigal said, shows that “families are resilient,” and that their difficulties do get better over time.

The study, published in the journal Pediatrics, is the first to follow the effects of extreme prematurity on family well-being for this long.

The young adults were all born between 1977 and 1982, at an average birthweight of 847 grams - or 1 pound, 14 ounces.

In earlier reports on the same group, Saigal’s team had found that compared with their normal-birthweight peers, the children tended to have lower intelligence scores and more difficulty with schoolwork into adolescence. Their parents were also more likely than other parents to say that their own emotional health was suffering.

On the other hand, the researchers also found that by the time the extremely premature kids were in their early-20s, they were almost as likely as their peers to have a job, be in school or living on their own.

The current study focused on overall family well-being and mothers’ health, surveying mothers of 130 extremely premature children (now in their 20s) and 141 mothers of young adults born at normal weights.

Overall, Saigal and her colleagues found, mothers of premature children reported no more marital strain, family dysfunction or personal physical or mental health problems than mothers in the comparison group.

This was despite the fact that 27 percent of the premature young adults had at least one neurological impairment. In fact, the study found, mothers of these children generally reported fewer family relationship problems than moms of preterm kids without such impairments.

Saigal called that a “paradoxical finding,” but also said that it makes sense at some level. In the survey, a large percentage of these mothers - 86 percent - said that raising their child had made them “feel better” about themselves. That compared with 53 percent of mothers of premature children without neurological impairments and 47 percent of those with normal-birthweight children.

“It’s not that it’s easy, but they do feel better about themselves. They develop a sense of personal mastery,” Saigal said. And that sense of mastery may translate into fewer family relationship problems.

One area where mothers of premature children did report more problems was in work life. Among mothers of neurologically impaired children, 14 percent to 17 percent said they had been unable to take a job or had missed a chance for job training or advancement; 26 percent said their husband’s work had been affected.

Those rates were lower in the non-impaired group, but still higher than those in the normal-birthweight group.

According to Saigal, it is not surprising that parents’ work life could still be affected even once their children were young adults. Many may have put their careers on hold when their child was younger and could still be seeing effects of that.

While the current findings do suggest that many families fare well in the long run, Saigal also pointed out that most families in the study were white, relatively well-educated and higher-income, and covered by Canada’s universal healthcare system.

Families with lower incomes, less education or less access to healthcare may well face greater challenges, and more family strain.

Saigal also noted that the young adults in this study were born at a time when neonatal intensive care was in its early stages. Many advances have been made since, and studies should continue to follow families of extremely preterm children born in more recent years, Saigal said.

SOURCE:
Pediatrics, online June 7, 2010.