At top, Bjorn Swenson lies in the neonatal intensive care unit at Women & Infants Hospital, in Providence, soon after his birth on July 31, 2007. Above, Bjorn is all smiles at his Attleboro home.

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Photo courtesy of the Swenson family

Late one night in the 23rd week of her pregnancy, Chrystal Swenson realized that something was wrong. She had just returned from her night job as a bank customer-service representative. Suddenly, she was bleeding. She woke her husband, Jace, and they rushed from their Attleboro home to Women & Infants Hospital, in Providence.

“I knew something wasn’t right,” she says.

At Women & Infants, two young doctors — residents working overnight — at first tried to reassure Swenson. But as one of them examined her, Swenson saw the doctor’s eyes widen and her face go ashen. “And they said, ‘Your baby’s amniotic sack is hanging out. His feet are hanging down.’ And I’m thinking: ‘This is not supposed to be happening.’ ”

A normal pregnancy is about 40 weeks. A baby born before 37 weeks is considered premature. At 23 weeks, Swenson was little more than halfway through her pregnancy. She was admitted to the hospital in hopes of keeping the baby inside her for a few days longer. Every day would count.

Special Report

Families, modern medicine
and premature births

These are stories of babies born too soon. They're about love and sorrow, triumph and resignation, medical miracles and social failures. And together they reveal the bigger story -- the baffling, relentless increase in premature births, and the price we all pay. Read the stories

Take the quiz: Are you at risk? What's known -- and what isn't -- about the factors that contribute to premature birth

Explore the graphic: Every day matters: Track the week-to-week development of the heart, lungs, brain and digestive system in the womb

Your turn: Share your experience with premature birth

For a week, Swenson lay in a bed tilted so that her feet were above her head. Doctors came in to talk to her about the baby’s prospects — and to ask Chrystal and Jace to make an extraordinary decision, a decision no parent ever expects to face.

A very premature baby cannot survive on its own. Doctors and nurses must swoop in to force oxygen and nutrition into the tiny, wrinkled body. They can save babies who wouldn’t have stood a chance decades ago. But should they? When the Swensons’ baby came — as it was bound to do soon — did Chrystal and Jace want doctors to do everything? Or nothing?

Years ago, a pregnancy ending this early would have been a miscarriage.

Today, parents have to choose.

If Chrystal Swenson had been 22 weeks pregnant, she and her husband wouldn’t have faced the question. At that stage of gestation, a baby is too underdeveloped to have much of a chance; the few who survive typically have profound handicaps. Although practices vary among hospitals, at Women & Infants doctors usually do not resuscitate babies born at 22 weeks or earlier.

If Chrystal had been 25 weeks pregnant, there also wouldn’t have been a question. The baby’s chances are so favorable that doctors would automatically bring to bear the full force of medical technology — tubes down the throat, needles into the abdomen, electrodes and sensors, all the bleeping and blinking machinery of what today passes for an artificial womb.

Instead, Chrystal and Jace stood in a moral and medical netherworld. At 23 and 24 weeks, the future is murky. Some babies born this early, called “micro-preemies,” survive and live full lives; many die or face severe limitations. And no one can predict how any individual baby will fare. Should Chrystal’s baby get to fight for his slim odds? Should the baby be spared that ordeal and the likelihood of lifelong disability?

DR. BARBARA S. Stonestreet keeps a snapshot of a pretty young woman pinned to the bulletin board in her office at Women & Infants. This woman, as an infant, had been Stonestreet’s first patient, back when Stonestreet was training in pediatrics at Stanford University. She was born at 31 weeks’ gestation, weighing just over three pounds. The year was 1973, and in those days the prospects were dismal for a baby so small.

But that tiny baby grew up to earn a Ph.D and work for a software company. A few years ago, Stonestreet went to her wedding.

Stonestreet always points to that woman, her first preemie, when teaching the neonatology fellows. Stonestreet’s former patient serves as a reminder that some premature babies — then, as now — astonish everyone, somehow dodging or withstanding the assaults of life too soon outside the womb.

After taking care of premature babies for 30 years in Women & Infants’ neonatal intensive care unit (known as the NICU, pronounced “nick-you”), Stonestreet knows the other stories, too — the babies who struggled and died, and those whose brains were damaged, who were overwhelmed with infections, who went home to dim futures.

So when it fell to Barbara Stonestreet to talk with the Swensons, she had years of accumulated knowledge to share. All the neonatologists at Women & Infants face the harrowing task of counseling families on the brink of a premature delivery. They walk a tightrope, trying not to let the burden fall exclusively on the parents while also respecting their wishes. The decision must be seen in the context of each family’s life: a woman in her late 30s or early 40s whose endangered pregnancy is her only chance at motherhood faces a different choice from a teenager with little support at home.

The Swensons asked Stone- street not to pull any punches, and she didn’t.

A micro-preemie weighs less than an eggplant and can lie in a man’s palm. Its skin is like jelly, wrinkled, hairy and easily torn. With no body fat, it loses heat quickly. The lungs cannot inflate and have not developed the tiny air sacs through which oxygen reaches the blood. The brain can be easily damaged by lack of oxygen or the bursting of fragile blood vessels. Intestines can also break open. And the baby’s immune system flails against infections.

Doctors know how to treat these problems, and that’s why more tiny babies are surviving. But they’ve had less success at preventing disability once the survivors go home. Only 1 percent of babies are born as prematurely as the Swensons’ child would be; those babies have the hardest time. Some go blind or deaf, some have severe intellectual limitations, and some develop cerebral palsy. Others seem to be OK, but when they get to school, parents discover they have attention deficit hyperactivity disorder, learning disabilities, poor coordination or behavioral problems.

“No one was saying everything’s going to be OK,” Chrystal recalls. “In fact, everybody was telling us, it’s probably going to be really bad.”

BUT STONESTREET could only talk about premature babies in general. She couldn’t tell the Swensons what would happen with their baby — whether he’d survive and what kind of life he’d have if he did. And she couldn’t tell them, as they pondered their decision, what was the right thing to do.

“There’s no right decision,” Stonestreet says. “At this weight category we don’t know what the right thing is. … That’s what makes our job so hard. With one individual baby it’s impossible to say what the future holds 20 years down the line.”

Studies of 5-year-old and 20-year-old former preemies tell you about the results of care given 5 or 20 years ago. But the care of preemies is improving every day.

Stonestreet urged the Swensons to read the research, including studies by Dr. Betty R. Vohr. Vohr runs Women & Infants’ follow-up clinic, which tracks the development of premature babies for the first few years of life. Vohr has been running the clinic since 1974. That was the same year that the first baby born weighing less than 1,000 grams (2 pounds, 3 ounces) survived at Women & Infants. Just this year, the baby believed to be the smallest ever to survive at Women & Infants was born on May 26 weighing 340 grams, the same as three sticks of butter.

Chrystal could not bring herself to read the studies. But Jace did. In them he found “not a lot of bright spots.” One article reported that 97 percent of babies born at 24 weeks had at least one disability.

“Most of the things that happen to children born at that age are negative,” Jace concluded.

Chrystal and Jace went back and forth. What was best for their family, including their sons, Jacob, 8, and Jonas, 3? Most important, what was best for the child they were about to release to the unforgiving air?

Both parents have experience with disabled people. In her previous job, Chrystal was the live-in manager of a group home for six adults with autism and Down syndrome. Today, Jace manages the computer network of the May Institute, a Massachusetts-based center that provides services to people with autism and other mental disabilities. They know people with disabilities who enjoy their lives. And they know the others: “My husband has seen children, I have seen children, who are just — they’re so disabled that you don’t even know if they’re happy. And that’s horrible.”

“I didn’t want to bring a child into this world to suffer,” Chrystal says. “Don’t care if he’s blind. Don’t care if he needs a crutch. Don’t care if he has one arm. Don’t care if he has no arms. Just want a child who has some chance of being happy in the world. … I was very adamant and frank with the doctors and people were offended that I said I am not going to bring a child into this world to suffer, to suffer for a period of time in this NICU and then to die there. I will not do that. I will not.”

The Swensons made their decision: to let nature take its course. Stonestreet says she supported them fully.

This, Chrystal says, was what the doctors told her: “When he comes out, if he breathes, if he cries, we’re going to do what we have to do. … But if he doesn’t, we’ll give him to you. You can hold him and” — Chrystal pauses for several seconds as the tears well up and her voice breaks — “he can go.”

CHRYSTAL WENT into labor on the last day of her 23rd week of pregnancy, and labored all night. There was no stopping it. Doctors have no clue what triggers labor when it occurs on time, never mind when it’s premature. Drugs can stall contractions for a time. But once a woman’s body makes the mysterious decision to deliver a baby, biological signals converge from so many body systems — and from the fetus, too — that there’s no way to shut them all down.

And no one could explain why Chrystal’s baby was coming so early. She had none of the usual risk factors for premature delivery. She’d already given birth to two full-term babies. She didn’t use drugs or smoke cigarettes. Married, educated, middle class and, at age 33, still in the prime of her child-bearing years, she had every reason to expect a full-term baby.

Why was this happening to her? As with nearly 40 percent of premature births, no one knows.

“I kept thinking,” Chrystal says, “ ‘I’m waiting here for my baby to die.’ ”

It was the end of July, and Stonestreet was about to complete her month-long rotation as attending physician in the NICU. Usually, she isn’t present at deliveries. But because of her role in the Swensons’ decision, and because the decision had been so wrenching, Stonestreet wanted to be there.

The morning after Swenson started labor, Stonestreet was reviewing the obstetrician’s report and noticed that the results of a recent ultrasound were missing. She called to find out the ultrasound’s results, the estimated fetal weight.

The answer shocked her: more than 800 grams. That was bigger, significantly bigger, than expected. A baby born at 24 weeks usually weighs 500 to 600 grams. Perhaps the Swensons’ baby was older than they’d thought.

Calculating a fetus’ gestational age is an imprecise endeavor, and this imprecision bedevils every discussion of premature births. It casts doubt on all the statistics, and makes it hard to predict a baby’s prospects at different gestational ages. Few women can say with certainty exactly when their child was conceived, so doctors rely on the mother’s memory of when she had her last menstrual period, and sometimes information from sonograms. But even the most careful dating can be two weeks off. And when you’re talking about a baby at the edge of viability, every day matters.

Stonestreet raced to the labor room. She told the Swensons their baby was bigger than previously thought. That meant his prospects were brighter, and they might want to reconsider.

But they couldn’t dally. Chrystal was already in labor, and their baby was feet first, a breech delivery. In that position, a baby’s head can get stuck during delivery, something a fragile preemie cannot withstand. The question they now faced: With this news about a bigger baby, did Chrystal want to have a cesarean section?

“They gave us two minutes to talk about it,” Jace says.

Chrystal called her parents, who had come to Attleboro from California to take care of the Swensons’ sons. “I wanted them to say that it’s OK if you bring an incredibly disabled baby into the world, that it’s OK for the family.” Her parents pledged their love. The Swensons decided to have the c-section.

In minutes, they were in the operating room. It was packed with specialists.

The tide was turning.

ON JULY 31, 2007, Bjorn Swenson, the Swensons’ third son, came into the world, weighing 760 grams, or 1 pound 11 ounces. Chrystal had been correct about his gestational age; Bjorn had just completed his 23rd week. But he was big for his age, and that gave him an advantage.

“He was kicking around, cried, had a good heart rate,” Stonestreet says. “He was a very spunky baby from the beginning.”

Bjorn was pink at first, but quickly lost color because his immature lungs could not take in oxygen. Immediately the nurses inserted a tube through Bjorn’s mouth and into his lungs, connecting him to a ventilator to help him breathe. They rushed him to the NICU.

“He did much better than we expected at that gestational age,” Stonestreet says. “He really didn’t require a lot of support.”

Still, Bjorn spent 110 days in the NICU. As his father says, the first two months were “the roller-coaster ride from hell.” The baby needed help breathing, and a couple of times the doctors gave him antibiotics for a possible infection. But he was spared the other serious problems — brain bleeds, heart defects, gut infections — that plague many preemies.

In November 2007, Bjorn went home, with oxygen and a device that measured oxygen levels in his blood. Shortly after, he was hospitalized overnight with a cold. He also needed hernia-repair surgery. But he got off the oxygen before Christmas.

Today Bjorn Swenson has enormous blue eyes that draw comments from strangers. When he fusses, his brothers fight over who gets to comfort him. He’s doing everything a child his age is expected to do. At a recent visit to Vohr’s follow-up clinic, Chrystal says, the specialists were deeply impressed with how well he passed toys from one hand to the other.

Chrystal laughs that off. “I know that Bjorn is going to do exactly what Bjorn wants to do,” she says. She doesn’t want to get too religious about it, but she thinks there must be a reason he’s here.

Stonestreet is optimistic about Bjorn. He did surprisingly well from the get-go, and he had several important advantages: his mother provided breast milk while he was in the NICU and continues to provide “an enriching environment” — a caring, educated family and two older brothers sure to challenge and stimulate him.

“The real question is, how is he going to do when he’s 5, 6, 7, 8, 9, 10?,” Stonestreet says. “And we don’t know yet.”

But the Swensons already know one thing. “Every day, he wakes up,” says Chrystal, “and he smiles at me.”

Tomorrow:

Why was Deborah in the hospital? She was born weighing nine pounds and looked healthy. But she was premature, and late-preterm babies like her can also have health issues.

freyer@projo.com