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. Last Updated: 07/27/2016

Saving Premature Babies Has Cost

It has been 11 years since Alex Martin was born, a half-kilogram bundle of miniature bones and bright red skin, with fingers no bigger than matchsticks and legs so thin they might have fit inside his father's wedding band. His parents, Rick and Allison Martin, waited four months to send birth announcements. "The doctors kept telling us we had to plan for his funeral," explained Allison Martin.

Today, Alex is a blond-haired, fair-skinned fifth-grader with clear brown eyes, gold-rimmed glasses and a collection of what his mother calls labels: mild cerebral palsy, asthma, hyperactivity and Asperger's syndrome, a form of autism. At an age when most children have conquered fractions, Alex wrestles with addition. He learned to read about a year ago and is racing through the Hardy Boys series. But speaking is a challenge.

Alex cannot ride a bike. He still wears sneakers that fasten with Velcro because his fingers cannot master the laces. Often, he retreats into a private fantasy world. A recent afternoon found Alex sitting cross-legged in the backyard of his family's home in Raleigh, North Carolina, spinning stories to an audience of no one as he smashed rocks against the dirt. "Life," his mother says, "is overwhelming for him."

It is also overwhelming, at times, for his parents, who are discovering firsthand what scientists are beginning to document about babies born as tiny as Alex: Their lives often grow more complicated over time. Long after their worries about simply keeping Alex alive have faded, the Martins are faced with new and no less daunting concerns: whether their son will ever be able to make change at the grocery store, drive a car or maintain a job. And who will care for him after they die?

It has been more than 20 years since doctors began saving extremely premature infants, and about a decade since advances in neonatology vastly improved the survival of babies of very low birth weight - those weighing less than 1,500 grams. The tiniest of these babies - micropreemies, they are called - are born as much as 14 weeks early and weigh less than 750 grams.

Thousands of these children are now well into their school years. The conventional medical wisdom had been that those like Alex, who are not seriously physically disabled, would catch up to other youngsters by age 5. And many do just fine. But as the first large group of tiny babies grows up, new research is showing academic and behavioral problems often surface in the school years.

"We used to say if they got to 2 or 3 and they were doing fine, they'd be OK," said Dr. Deborah Campbell, director of the neonatology division at Montefiore Medical Center in New York. "Now we know that is not necessarily true."

In one recent study of 150 teenagers who weighed 1 kilogram or less at birth, nearly one-third had significant physical disorders, including cerebral palsy, blindness and deafness. Nearly half were receiving special education assistance, compared with 10 percent in a control group. But the study, which appeared in February in the journal Pediatrics, also found that even those children with minor physical problems scored significantly lower on achievement tests than those in the control group.

"We can save tiny babies now, which we weren't able to save before, but with the technology there is a price," said the study's author, Dr. Saroj Saigal, a neonatologist at McMaster University in Hamilton, Canada. Saigal said she had been flooded with letters, many with the same message: "Behind the success, as this child is called by the medical profession, there are lots of problems."

The vast leaps in survival of extremely premature infants came with the widespread use of a synthetic form of surfactant, a chemical that helps babies' lungs absorb oxygen. Before surfactant, about one-quarter of the smallest babies survived; today, about one-half will live.

There is no thornier decision in medicine than the decision to rescue a tiny baby. It is expensive, costing as much as $2,000 a day, and wrenching for doctors and parents. Some advocates for parents of premature children say that if doctors were more forthright, parents might make different choices about whether to rescue their babies.

Doctors say they do routinely hold discussions with parents on whether to withhold care. But they also say making predictions is difficult. How well premature infants fare depends on their birth weight and on whether they suffer serious complications, like bleeding in the brain. It also depends on socioeconomics.

To the Martins, there are encouraging signs. But if the past is any predictor of the future, they know there is uncertainty ahead.

"What prematurity is about," Martin said, "is risk. And that risk never goes away."