The Providence Journal
September 7, 2009
By Felice J. Freyer
To learn how to read as a little girl, Amy Gempp relied on recorded books. She donned headphones, painstakingly matched the spoken words to those on the page and forced her eyes to move from left to right.
Her twin sister, Stephanie, didn't speak until she was 3½, and then only to Amy. After Stephanie started school, her parents, William and Diane, found that she learned best through motion. They chalked the capitals of Europe on the driveway of their Barrington home. "France!" her mother would cry, and Stephanie would dribble the basketball to the word "Paris" and then shoot the basket.
It was hard work for the family, which includes an older son, Christopher. But today, at the age of 21, the Gempp twins are thriving young adults. Amy graduated from Johnson & Wales University and is working as a cook and living in her own apartment. Stephanie is completing her studies in business at Nichols College in Dudley, Mass.
"They're both very successful in the areas that they want to be in," says their mother, Diane. "You can't ask anything more than that."
Amy and Stephanie were born 12 weeks early in 1988. Their experiences illustrate, almost to the letter, the findings of the few researchers who have followed people born prematurely into their adulthood: learning problems are common, but when nurtured in a good home environment, the majority of preemies grow into productive, independent adults.
"Against all odds, they have learned to adapt and had a more successful transition than we ever predicted," says Dr. Saroj Saigal of McMaster University in Hamilton, Ontario. Saigal has been following 166 people who were born weighing less than 1,000 grams (2 pounds, 3 ounces) between 1977 and 1982, comparing them with 145 full-term children born during the same period.
The Gempp sisters followed an unpredictable course, as often happens with preemies. At first, it looked as if Amy would have the fewest problems. She breathed on her own at birth and had trouble only with eating. As an infant, Stephanie had a much harder time; her immature digestive system couldn't function and she took all her nutrition intravenously. She still has scars from all the intravenous lines. But by the time they were in first grade, Stephanie was starting to catch up, while Amy's difficulties were first becoming evident. Eventually Amy was diagnosed with both dyslexia and attention deficit hyperactivity disorder. By high school, Stephanie no longer needed special education; Amy was in special classes through high school and says she still struggles to read and write.
"It's hard to say whether their learning issues were as a result of their premature birth or just the way it would have been anyway," Diane says. As a guidance counselor, Diane knows plenty of full-term children who have learning problems.
Today, Stephanie is flourishing in college. She'd been socially immature in high school, but now she says a high point of her college days has been the many friendships she's developed. She earned straight A's last semester and played on a winning racquetball team.
Amy has found the perfect career for someone who hates sitting still. As a cook, "I can do a lot of things at once," she says. "It's very hands on. That's what I need. I can't have a 9-to-5 job where I would just sit at a desk all day. I would go crazy."
The Gempps think they benefited from their struggles. "We learned to get through it and it's made us harder workers," says Amy. "It made us better. … I worked so hard for everything I have that I want to give back. I want to help others that need help."
Saigal, the Canadian researcher, was surprised by her findings about adult preemies. "Our hypothesis was that [preterm] children wouldn't do as well as those born at term," she says. "They did have some problems earlier. A quarter had neurological problems and more than one-third had learning difficulties in school. And some had behavioral problems. This was not entirely unexpected."
At age 5, age 8, and then in adolescence, the difficulties persisted. But when Saigal and her team checked back with the study subjects in early adulthood — asking about their education levels, employment, living arrangements and marital status — they found a brighter scenario. "They're functioning way better than we ever anticipated," she says.
Saigal acknowledges, however, that her subjects were a homogenous group from a limited geographic area, mostly white and advantaged, and beneficiaries of Canada's universal health care system.
A Cleveland researcher, Maureen Hack, has enrolled poor inner-city families in her studies and found less encouraging results: at age 20, fewer had graduated from high school and those who had were less likely than full-term children to go to college. But even Hack agrees: "In general, the majority do do well."
Findings vary in different studies. A recent Norwegian study, for example, found that adults who were born extremely small were less likely to have a high income, to be employed and to have children.
Still, Saigal says, "Every single study says that a large proportion of adults born prematurely have completed high school, are functioning well and are living an independent and productive life. … There's a minority who's doing poorly."
Today, doctors are saving more of the tiniest babies — those most likely to do poorly. At the same time, though, medical care for premature babies, as well as follow-up care, has improved greatly. Only time will tell how future preemies will fare, but Saigal says she's optimistic. "We know that survival has improved and disability rates haven't decreased correspondingly. On the other hand, the disabilities are milder. They're functioning better."
Another question is whether preemies will face health problems in middle age. Some studies have shown a higher risk of cardiovascular disease, diabetes and mental-health problems among people who were born small.
The Gempp twins were part of a long-term study — not Saigal's, but one conducted by the Brown Center for the Study of Children at Risk, which has been following 213 children born between 1985 and 1989. While most studies compare children based on their birth weight or how early they left the womb, the Brown researchers took a different tack. They grouped the preemies according to their illnesses in the first months of life.
The goal was to understand how environment and experience affect preemies as they grow.
"Some of the effects of environment were more strong than the effects of prematurity," says Mary C. Sullivan, leader of the study and director of graduate studies at the University of Rhode Island College of Nursing. Children had the worst outcomes if they were raised in extreme poverty, in chaotic, disconnected families, or by parents who were highly stressed every day.
A family's income was not, by itself, a defining factor. More important was a parent's persistence in getting the services the child needs. "It takes tenacity and little sophistication in knowing how to maneuver through advocacy for the child," she says.
Their findings also include some surprises. One was that a child's abilities as an infant or toddler — or even at school age — don't predict how he or she will do later on.
"I thought once they were 8 we'd know where they were, but no," Sullivan says. Some children first encountered learning problems when they reached middle school. "When asked to do algebra or more abstract thinking, they had difficulty. Parents were really thrown off."
Another surprise concerned the differences between preemies who'd been sick and those who'd been healthy as infants. Contrary to expectations, at age 12, those who had been spared lung disease, infections, brain injury or any serious medical problem — the healthy preemies — performed worse than those who'd been sick. In contrast, preemies who had been sick as newborns — as long as they did not suffer a brain injury — were doing as well as full-term children at age 12 and better than any other group of preemies.
The researchers theorize that the sick preemies got more attention, special services and parental monitoring than the healthy ones, enabling them to overcome any deficits.
KATE HANSELMAN was in that group — a sick preemie who became a standout as she grew.
Kate was born in 1988 at 28½ weeks' gestation, weighing 2 pounds, 10 ounces. In the hospital, she endured a bit of everything that can go wrong in the neonatal intensive care unit, including a minor brain bleed and a serious gut infection.
But once she came home, Kate grew and caught up, and never hit any rough spots. "By the time she hit 2, she seemed to be right on target, and hasn't looked back," says her father, Eric.
At 18 months and again at 4 years, Kate's mental development was high, but her muscle tone and strength were low, the Brown researchers found. By age 8, the movement problems had vanished.
"She's had a wonderful academic career," says her mother, Sarah. "She's an interesting, bright, funny, artsy kid."
Today, Kate is a senior at the New School in New York City, studying journalism and photography, and living in an apartment in Brooklyn.
Why did Kate do so well?
Kate credits her parents for their skill in raising her. Her parents, who live in Acton, Mass., attribute Kate's success to her tenacity. "She just hung in there and worked through it," Eric says.
They may all be right. Certainly, Sullivan's research shows that the parent-child relationship can be a powerful force in overcoming the challenges of prematurity — and that persistence is a trait that benefits the child.
Sullivan remembers watching Kate and her parents during their visits to the research center. Kate would be asked to perform a task, such as building a train track. Her parents were instructed to give her "as much help as she needs."
"We did see some beautiful interaction in terms of problem-solving between Mom and Kate," Sullivan says. "Both Mom and Dad had a similar style in working with Kate."
Kate's parents instinctively knew how to strike the right balance, Sullivan says; they let Kate figure out as much as she could on her own, and stepped in only when she truly needed guidance.
Kate says that having been born prematurely has affected her life primarily in the reactions she gets when she tells people: "People find out and they're like, ‘What? But you're fine!' "
She adds, "It's affected me in that sometimes I realize how lucky I am."
The year before Kate was born, Samantha DiSpirito came into the world — at 24 weeks' gestation, weighing a pound and a half, much tinier than Kate. Samantha would travel a very different road.
In her year and a half in the hospital, Samantha fell prey to one illness after another, nearing death time and again. Loss of oxygen to her brain when she "coded" during an illness left her blind and severely brain-damaged.
As a result, Sam has never sat up unsupported, never walked, never dressed herself, never uttered a word.
What Sam does — frequently — is smile. At age 22, Samantha gives every appearance of being happy. But her mother, Sharon, doesn't know how much Sam understands of the world around her.
With today's treatment, a preemie like Sam would probably not suffer such severe injury. But there continue to be babies, rescued at early ages, who are left severely impaired by bleeds and other brain injuries.
When Sam was finally ready for discharge, Sharon decided to take the baby to her Woonsocket home rather than putting her in a long-term care hospital. It was an unusual decision at the time: Sam still needed a ventilator, feeding tube and round-the-clock care. Home nurses took care of her while Sharon was at work.
Sharon paid a price: her husband left, she could never travel far from home and it took her 10 years to earn her bachelor's degree. But she says her life is merely different, not worse, than any other parent's.
"I probably don't get the feedback that other people get but I don't get the negative feedback either," she says. "I don't get any of the ‘No! I don't want to!' "
Two years ago, Sharon and Sam moved to Apex, N.C., not far from Raleigh. After her father and her boyfriend died within six weeks of each other, Sharon decided to fulfill a longstanding desire to move to North Carolina. She retired from her job in state government.
But she left behind her support system in Rhode Island, including better social services. In North Carolina, an aide comes for five hours a day, five days a week, so Sharon cannot work and uses her little free time to volunteer. Sharon can't take Sam far from home because, for diaper changes, she needs a bed and someone to help lift her 95-pound daughter. Also, her van has no air-conditioning and Sam has respiratory problems.
"I don't go on vacation, I don't go out to eat, I don't do anything. I don't need any of that," Sharon says. "If I were looking at it from other people's perspective, it's confining. But it's what I've been doing for 22 years. It's what I know, it's the way I live. … I'm very content with my life. Sam and I get along fine."