In January 2004, John and Helen Oliveira brought their identical twin boys home from the hospital -- William first, Joseph a week later. The boys, born extremely premature, had spent months in intensive care, overcoming one calamity after another.

It was a triumph that they'd survived. But for the Oliveiras, as with most parents of preemies, homecoming was heavy with worry. Their boys -- who looked so much alike even then, with their shocks of red hair -- were destined for different futures, and uncertain ones.

No parent knows what a child will become. But the mysteries run especially deep for those whose babies are premature. Joseph and William were born at 24 weeks' gestation, weighing about a pound and a half each. In the neonatal intensive care unit, one would get sick and the other would follow with the identical illness -- "devastation and devastation revisited" is how Helen describes it. But Will took one extra blow.

On his fourth day of life, the fragile blood vessels around Will's brain burst, flooding the chambers that hold cerebral-spinal fluid. The blood put damaging pressure on the nerve cells and blocked the drainage of fluid from his skull, requiring a shunt. The event, called a Grade 4 intraventricular hemorrhage, is among the most devastating injuries a premature baby can sustain.

After that, every time a new problem arose in the NICU –– an infection, the need for heart surgery -- the doctors took Helen and John aside, displayed CT scans of Will's damaged brain and started a painful conversation. Given his prospects, did they want to continue with aggressive medical care? What kind of life would Will have? At each juncture, the Oliveiras said, yes, keep trying.

So when they brought their babies home to Coventry, the Oliveiras knew that Will was with them as a result of their fierce insistence. But they didn't know what the future would bring.

It's an urgent question for parents and policy-makers alike: What will become of the more than half-million children born prematurely in the United States each year? No one knows how to stop the increase in babies born before 37 weeks' gestation, who now account for 1 in 8 births. And while those born extremely early, like Will and Joe, tend to suffer the most grievous effects, even babies who come a couple of weeks too soon face a higher risk of learning and health problems than full-term babies.

An early birth has a long aftermath. In ways obvious or subtle, shocking or imperceptible, preemies are different -- perhaps throughout life.

Journal photo / Kathy Borchers William uses a walker to get around his family’s Coventry house, with the encouragement and help of his mother, Helen, and brother, Joseph, who tells his mother that William will be able to play on his own someday.

Roughly 10 percent of babies born weighing less than 2½ pounds suffer brain injuries as severe as Will's. But even for the majority without brain damage, like Joe, the risk of problems is much higher than for full-term babies. Close to a third of preterm babies with no brain injury need remedial help in school. Many have learning disabilities, attention deficits, poor physical coordination, behavioral disorders and trouble relating to their peers. The smaller a child at birth, the more likely that he or she will have problems.

Early birth seems to disrupt the process of brain development, so preemies grow "alternative circuitry" to compensate, says Dr. Betty R. Vohr of Women & Infants' Neonatal Follow-up Clinic, who since 1974 has been studying premature children as they grow up.

In that year, one baby at Women & Infants survived weighing 1,000 grams –– just under 2¼ pounds. That child, Vohr says, was severely impaired. Today close to 100 babies a year are born at Women & Infants weighing under 1,000 grams, but thanks to improved NICU care, their outcomes are better, and nearly 20 percent "are doing really great," Vohr says.

Most premature children catch up with their peers, on average within 2½ years, Vohr says. Even among the tiniest preemies –– those born weighing less than 2 pounds, 3 ounces –– about 70 percent enter mainstream classes and have normal intelligence. But their intelligence scores remain about 10 points lower than those of full-term children. "They probably don't reach quite the potential they would have if they had been born full-term," Vohr says.

The findings of Vohr and other researchers who have studied preemies over time can prompt the proverbial inquiry about whether the glass is half empty or half full. Despite all the problems, the vast majority of preemies get bigger, stronger and smarter over the years and function well in adulthood. But their childhood difficulties are not inconsequential. And there is no moment in a preemie's life when the future can be predicted. A child who's doing well in school at age 8 can encounter learning problems at 14. A struggling 16-year-old can grow into a thriving adult.

"If you give these kids enough time to recover," says Vohr, "except those with the most severe forms of brain injury, they're going to be great."

HELEN OLIVEIRA remembers sitting in a rocker in the NICU shortly before the boys were discharged. The attending physician approached her and said, "Do you know how hard this is going to be? I hope you have a lot of support at home."

Joseph learned to smile. Around the same time so did William.

Then Joseph found his toes and put them in his mouth. He learned to sit up. He started pulling himself up, and then walked. And then he talked. Joe did all these things at the expected age.

Journal photo / Kathy Borchers Nurse Marie Kerrigan does stretching exercises with William while his brother Joseph joins them.

Will lay there, watching. Helen could tell he wanted to move. "You can see him looking down at his feet. ‘Move!' " But his body would not respond.

A few months after the babies came home, Helen discovered she was pregnant again, and in March 2005, she gave birth to Teresa, who was full-term.

Meanwhile, Helen made sure that both boys had physical and occupational therapy. She set about finding additional services for Will to help him learn to move and, especially, to communicate. With each passing month she became increasingly convinced that Will was thinking, hearing and understanding as well as any child -- a sharp mind trapped in a floppy body.

Helen's advocacy for her boys, John's consistent role in their care, the solidity of their marriage -- Helen says the ordeal has made the couple appreciate each other more -- these matter as much or more to the boys' future than all the medical miracles that kept them alive in the NICU.

Journal photo / Kathy Borchers John Oliveira says he and his son developed a strong bond the day William was born.

"Biology is not destiny," says Barry Lester, founder and director of the Brown Center for the Study of Children at Risk.

"The brain repairs itself. The post-natal environment can alter the architecture of the brain. … Because of the power of the post-natal environment, a lot of these kids develop perfectly normally."

But because women from stressed or impoverished homes are more likely to deliver prematurely, a high percentage of preemies go home to households ill-equipped to meet their needs.

"Many mothers bring a tremendous amount of guilt and anxiety to the preemie experience," Lester says. "If there is one thing I would change, it would be to help the parents work through their own baggage so they can develop a good relationship with the baby."

The parents of premature babies are profoundly affected by their NICU ordeals. Mothers often end up in tears when discussing it. Helen Oliveira believes she suffers from post-traumatic stress disorder as a result, and recent research suggests that she is not alone. Parents also feel highly protective of a baby rescued so many times from death. Perhaps because of that, preemies are prone to anxiety or separation difficulties; as teenagers they're less likely to take risks -- or to get in trouble.

WHEN YOU SEE them side by side –– today, at age 6 –– William and Joseph Oliveira seem to personify the prematurity epidemic in all its variety and uncertainty. With their identical flaming hair and dark eyes, their resemblance is made all the more striking by their differences.

Joseph is all bounce and chatter. Greeting a visitor, he brandishes a Star Trek toy and explains its meaning and provenance (a cereal box). Joseph has developed normally so far, except for weak, shaky hands -- which he's likely to outgrow. He has just started kindergarten at Black Rock Elementary School in Coventry.

William says nothing, but he smiles in greeting, his head listing to the side. Strapped in a chair that supports him in a sitting position, he grimaces to indicate he wants to do something physical. For a kid with severe cerebral palsy, that's a tall order, but Will is ambitious.

Concerned, Kerrigan removes him from the walker. She speculates that his leg is stiff because he'd recently suffered a seizure. Will's seizure disorder, diagnosed at 18 months, could take his life at any moment. Typically fluids build up in his throat, his breathing gets shallow, his heart rate soars, and a lung collapses on the ambulance ride to the hospital, where he spends a few days on a ventilator. The seizures used to come twice a year; now they seem to be getting more frequent but less severe.

Kerrigan lays him on a mat for a massage. She holds up two CDs in their packages. "Which one do you want?" she asks. Will circles an arm several times before a hand lands on the disk of his choice.

"The biggest problem with him is communication," says Helen. With money from the Shriners, she consulted communication experts at Boston Children's Hospital and produced "a communication notebook" -- a binder of pictures of items or activities in Will's life, such as a walk in the park, or crackers and cream cheese. Someone turns the pages, and Will smiles when he sees the thing he desires. "Before," Helen says, "we didn't have a clue."

Cerebral palsy today is not the affliction it once was, leaving victims twisted and stiff in a wheelchair. Kids with mild cases eventually run around with their peers, although they're less coordinated. And even with severe cases like Will's, treatments such as physical therapy, surgery and Botox shots can keep people more comfortable and maximize their abilities.

Helen had to forsake her career to take care of her children. She resigned a high-powered job as market manager for Foster Grant because it involved frequent travel and long hours. When Joe and Will were about 3, she started working a 4-to-midnight shift at a center for troubled children. It was a big step down professionally, but the schedule worked for the family. John takes over the kids' care when Helen leaves for work.

Joseph and Teresa accept their brother as he is and enjoy "playing" with him even though he can barely move. "He plays with his brother every day in his mind and he's happy with that," Helen says. "Joe has a belief his brother will be able to do all that stuff. He's just waiting for it to happen. ‘Don't worry, Mom, he'll be walking soon. I'll help him. I'll teach him.' "

When Will goes for physical therapy, Joe carries his backpack to the car and props the doors open with shoes as someone carries out the milk crate of equipment Will needs in case of a seizure.

"In all seriousness, William's is not the worst-case scenario," Helen says. "He is going to school, he is doing things … If you get to know him, he's a child that's trapped in his body that isn't listening. But he's a little guy that understands what you're saying to him. He has fun, he enjoys life, he laughs, he cries, he learns -- and so it's difficult to see him struggle."

John Oliveira, a 42-year-old technician who was recently laid off, says he has always believed that William strongly wanted to live and would have a worthwhile life. He says he developed a deep connection with Will the day he was born, when the baby grasped his pinky with a tiny hand. When the boys were in the NICU, he turned aside -- sometimes angrily -- the questions about William's future quality of life.

Journal photo / Kathy Borchers Helen Oliveira says William, through all his difficulties, has been a fighter, but she worries for his future. "Will he be happy in the long run? I am not sure. And that disturbs me," she says.

"They're looking at all their charts, the blood levels, statistics," John says of the doctors. "But there's two factors that you don't count: one, the will to live, and two, the love of the parent. To me there is no measurement for that. … He showed on his own numerous times that he was here, wanted to be here, wanted to live and that's what I've gone with ever since day one.

"Would I do it again? Absolutely."

Helen, who is 40, says she had agreed with the decision to keep William alive, motivated chiefly by hope. "As long as he was fighting, we were going to fight with him," Helen says. "I guess I'm a believer. I was like, ‘Well, it can't be that bad. We'll be all right.' "

Today she says she has no regrets, but worries about Will's future. "Will he be happy in the long run? I am not sure. And that disturbs me. That makes me sad. I might be completely wrong but I worry that he might not be happy.

"Would I do it again if I knew the outcome? I don't know. I love him to death but was it the right thing to do?"

Helen is in tears now. "You don't know what the answer is."

ffreyer@projo.com