Against the odds

Against the odds
For preemies, smaller size means bigger risk for lifelong problems

By Scott Williams
October 23, 2000
Photo: Artville

Many premature babies suffer from chronic medical and developmental problems, such as chronic lung disease, respiratory distress, visual impairment, feeding issues and cerebral palsy.


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Infants are among nature’s most vulnerable creatures. Born before they can walk or feed themselves, they’re completely dependent on their parents. So imagine how much more vulnerable a child born prematurely must be, especially one with an extremely low birth weight. These babies’ medical problems and disabilities are setbacks that three recent studies suggest don’t disappear over time.

In the studies, researchers found that about half of preemies suffer from some sort of disability, one-quarter severely so, and that preemies tend to have more problems in school and in childhood socializing. One study in the United Kingdom, published in the New England Journal of Medicine, followed preemies from birth to age 5; a Syracuse University study followed the children to age 10; and a third study, published in the American Sociological Review, tracked children to age 19.

The researchers also found that preemies have significantly more behavioral, learning and thinking problems than children who are born full term, and babies born weighing less than 5½ pounds are almost four times more likely not to graduate from high school by age 19 than their normal birth-weight siblings.

More and younger
"We’ve probably seen an increase in babies born prematurely because we’re saving them at younger and younger ages," said Laura Kender, director of the Early Childhood Intervention Program in the Lubbock Independent School District in Texas. "We have babies come to us at 23 weeks gestation."

As a result, many suffer from chronic medical and developmental problems, such as chronic lung disease, respiratory distress, visual impairment, feeding issues, cerebral palsy, language delays, and fine and gross motor skills delays.

These problems, no matter how aggressively they’re dealt with, can make learning and developing socialization skills difficult, said Joan McCollom, a former physical therapist and a special education teacher for 31 years with the San Diego Unified School District.

"You can’t expect them to keep up academically year by year," she said. "They can learn what another child can learn, but it’s going to take them more time. If you can’t get out and play with the other kids … then socialization skills are more difficult," she said.

Many premature children with disabilities are neglected or abused because they’re so difficult to care for, said Julie Ruff, MSN, a certified pediatric nurse practitioner who works with disabled children from birth to age 21 at the Davidson Respite House in San Antonio.

"What we see more of here is the long-term outcome of prematurity," she said. "We get the children who went home with their families and years later they can’t cope with it anymore."

Causes and prevention
Lack of prenatal care, drug abuse, alcoholism and hypertension are among the leading causes of premature births, Ruff said. Other causes include increased maternal age, teen-age pregnancy, multiple births, "and there are always a large number of unknowns where the mother did absolutely everything right," she said.

Better prenatal care will help reduce premature births and disabilities, said Jane Tustin, MSN, RN, coordinator of health services for the Lubbock Independent School District and president of the National Association of School Nurses. She also believes premature children who need special attention are being identified earlier because of increased awareness that preemies may have problems.

In Lubbock, babies who need special help are referred to the Early Childhood Intervention Program, which deals with children from birth to age 3.

Early treatment
Kender, director of the intervention program, oversees 60 nurses, physical therapists, speech pathologists, dietitians, social workers, certified teachers and early intervention specialists who provide a range of home-based services to more than 400 children in a 22-county area.

"We have learned through all our research that a child between birth and age 3 learns much better if we can take our services to their natural environment," she said. "We hope we’re able to intervene at a young age so that they’re walking into the classroom instead of going in in a wheelchair."

Gretchen Meyer, a physical therapist for Easter Seals/United Cerebral Palsy in Peoria, Ill., said much of what she and others who work with preemies with disabilities do is to educate their families. "They need education on the disability itself; they need to be educated on things they can do at home that will help them in taking care of that child and also with helping that child’s motor development," she said.

More must be done to ensure that all families have access to the equipment their disabled children need, McCollom said. Meyer said more research is needed on the efficacy of different types of treatment.

The findings showing that premature children often face lifelong disabilities has led some to question whether these children should be taken from the womb at such young ages to begin with. Would it be better not to intervene and let nature take its course?

"That’s a really hard question to answer," McCollom said, "because in San Diego we’ve had babies who were born at ounces and survived and maybe ended up [deaf and blind]."

It isn’t always clear at birth how a child will turn out, Ruff said.

"It’s not until later on that you get a clear idea of what the potential of this individual child is going to be," she said. "I think it’s less about prematurity and more about access to health care that determines how well a child is going to do."