Last modified: Sunday, March 23, 2008 1:08 AM EDT Crystal Swenson holds her son Bjorn. (Staff photo by Mark Stockwell) Attleboro mom shares trials, triumphs of 'preemie' ordeal BY SUSAN LaHOUD / SUN CHRONICLE STAFF ATTLEBORO -- Chrystal Swenson said the doctors were never able to pinpoint why. After all, she had succeeded in carrying her two other sons to full term.But then there was Bjorn. On July 25, 2007, in her 23rd week of pregnancy with her third son, Swenson went into pre-term labor. Bjorn arrived a week later, weighing in at just 1 pound and 11 ounces. Exactly how small is that? "I don't want to be horrid," Swenson said, "but he was like a pound of butter with arms, legs and a head. Imagine that little box of butter, but cute." Bjorn, a "micro-preemie," would spend the next 100 days living in the NICU (neonatal intensive care unit) at Women and Infants Hospital in Rhode Island. His parents, Chrystal and Jace, visited him once or twice each of those days - and sometimes stayed the entire day. Despite being surrounded by people, it was a lonely, isolated struggle for Chrystal Swenson. But she hopes that by sharing her story, she can help other mothers of premature babies, especially those as tiny as Bjorn was. Increasing numbers Bjorn is among an increasing number of babies born prematurely in the United States. In 2005, 12.7 percent of births - more than a half-million - were "preemies," meaning they came before 37 weeks of gestation, according to the National Center for Health Statistics. The agency estimated the number of premature births would climb to 12.8 percent, or 543,000 babies, in 2006, a 21 percent increase since 1990. Prematurity is the leading killer of babies in the first month of life, and even late preterm infants have a greater risk of respiratory distress syndrome, feeding difficulties, hypothermia, jaundice and delayed brain development, among other challenges, according to the National Institute of Child Health and Human Development. Swenson welcomed a reporter and photographer to her home recently to tell the story she hopes will inspire other moms in similar circumstances. In the high-ceilinged living room of the family home, which was formerly a church, she sat on the couch with her baby son, who has soft brown hair and big blue eyes ("Daddy's eyes," she cooed to the child). Bjorn, at the time of this interview at 7 months old, weighed 14 pounds, 6 ounces - a healthy weight considering his early arrival into the world. He wasn't able to go home until a few days before Thanksgiving, which was only a few days after the date he would have been born under normal circumstances. Swenson's husband Jace, 39, works at the May Institute in Randolph, which researches and offers programs for children with autism and other behavioral conditions. He said that every parent, including himself, "expects everything is going to be perfect" when expecting a child. "But you know ahead of time, if your wife goes into labor at 23 weeks, there are going to be problems." There was no warning for Bjorn's premature arrival. Chrystal, 34, came home from work at Bank of America on July 25 and started bleeding. At Women and Infants, the doctors told her she was dilated and the baby was in a double-footed breach position. "It was just shocking to us, especially after having two children who did not want to come out," Chrystal said of her first two sons, both delivered after their due dates. There is a note of disbelief still echoing in her voice. "You can't prepare for it," Jace said. "It's like when a parent gets a call in the middle of the night saying their child has been in an accident." Chrystal said two young doctors attended to her; one looked like he was about to cry. At that point she thought they were "going home without a baby." "I looked at the doctors' faces that looked like they were telling us we were going home without a baby. They weren't hopeful," she recalled. As Chrystal and Jace told their story, their 3-year-old son Jonas put wooden trains on tracks and covered them with Play Doh. Jace noted that Jonas's delivery was difficult, even though he was carried to term. There were no complications with their first son, Jacob, who is now 8 and attends Willett Elementary School. The experience with Bjorn's birth even now "seems so fresh," Jace said. "I think about it, but not in terrible detail... I was worried about my wife." "I was more worried about what I would tell the boys, what I would tell Jacob," said Chrystal. She was on bed rest in the hospital for the next week. "We didn't know what was involved between 23 and 24 weeks," Chrystal said. What they quickly learned was "that there are a lot of other people involved in making decisions, like if he can live or if he cannot live," she said. "At 24 weeks, under the law they have to do everything they can; at 23 weeks, they don't. "All along, my husband and I had discussed that we wanted our baby to have the best life he could, happy and healthy," she said. "We wanted him to enjoy his life." Given the situation, they had little time to make the decisions they now faced. They didn't want to bring someone into the world who would suffer interminably. "If he's blind or deaf, that's fine. If he's missing a limb, that's fine. We didn't say we wanted a 100 percent perfect baby." Chrystal said. The Swensons thought about the happy children with autism where Jace worked, and felt that's what they wanted for their son. "Not perfect, but perfect for themselves," Jace said. What were the chances of that? "I worked in the medical field in California, on an ambulance. I never saw babies like this that lived," said Chrystal, referring to babies born so early. The couple asked the doctors for as much information as possible. "My husband read; I just could not do it," she said. "I kept thinking, 'That's my baby.'" The deadline for a decision came quickly. Chrystal went into labor again and the doctors weren't able to stop it. At some point, she recalled, Dr. Barbara Stonestreet came into the room and said, "I think we can save your baby, he's bigger than we thought." "We thought, 'what do we do now?" Chrystal said. The couple asked for a few minutes alone and called Chrystal's father, who is a nurse. Her parents, who live in California, were caring for the couple's sons at home. "We just decided, let's do everything we can to keep this baby alive," Chrystal said. The birthing process was "like a military operation," with at least a dozen people in the room, Chrystal said, chuckling a bit. "More people saw me naked than I ever want to again." Emotion overwhelms her as she starts to describe the birth. It was a Cesarean so as to cause less trauma. The baby was immediately taken into another room, Chrystal recalled tearfully, taking a few minutes to compose herself. (Jonas asks why she's crying. She comforts him and he goes back to his father while she holds Bjorn closer and kisses his head.) "It's where they see if they can save your baby," Chrystal said, of Bjorn being taken elsewhere. "They just don't know. He was so early.... They can't give you a guarantee, like a car." There are a number of causes for preterm delivery, and not all are within a mother's control. Hormone imbalance, a structural abnormality of the uterus, or an infection are among the possibilities, according to kidshealth.org. Preterm delivery is more likely when a woman is older than 35, younger than 19 or is carrying multiple fetuses. Sometimes, the cause is simply unknown, according to the Web site. With recent medical advances, more than 90 percent of babies who weigh upwards of 2 pounds survive; those who weigh just over a pound have a 40 to 50 percent chance of survival, but their chances of complications are greater. When Bjorn was delivered, Chrystal didn't see or hear him. "I was in a different place," she said. Jace estimated it was between 10 and 12 hours before their first glimpse of the baby. In the neonatal intensive care unit there are bays, with babies in every bay, Chrystal said. So, being wheeled into the unit on her bed, seeing her tiny son for the first time, "was a very shared experience." "I just saw him and thought, 'Oh my goodness, oh my goodness." There were a million thoughts, Chrystal said, one of them being, "maybe I did the wrong thing." Had she made a decision that would lead this child to suffer the rest of his life? "I was very worried. He was so tiny," Chrystal said. "It was a silly thought, but I thought, 'I guess we won't be leaving in 48 hours." It wasn't until 14 days after his birth that Chrystal could actually hold Bjorn. Before that, she could only touch a hand, a foot. Bjorn was on a special ventilator that could be moved onto Chrystal for a "skin-to-skin" encounter. "It was amazing," she said, the awe still in her voice. Medical and educational costs and lost productivity due to premature births in the U.S. totaled more than $26.2 billion in 2005 alone, according to the March of Dimes. And there are other costs. Bjorn's extended stay at the hospital was a tough proposition in itself. Then, there were the couple's young sons at home. There was still school and preschool. They wanted to do everything other kids their ages did - run, jump, play and have their parents at home. "It was very hard," Chrystal said. "Suddenly, Mom and Dad were not there.... It affects every second of your life - sleeping, eating, trying to be normal." Chrystal recalled one time during that period when she was heading into a conference with Jacob's teacher and got a call from a doctor telling her Bjorn had just stopped breathing. "We couldn't make any plans," Chrystal said. "Jacob would ask, 'Can we go to the movies?' We'd have to say, we don't know." Some kids at school called Jacob a liar because they did not believe him when he said his brother weighed 1 pound when born. He brought in a picture to show them. The family has pictures of Bjorn for every day of the 100-plus days he was in the hospital. Of course, the daily commutes also entailed finding all the best traffic routes to the hospital. And Jace was still trying to work. Meanwhile, visits at the NICU "were very loud, like being in a casino - where if everything goes right, you win a baby," Chrystal said. A kid's club at the hospital, established in conjunction with the March of Dimes, made Bjorn's brothers feel "more normal," Chrystal said. There, they got to socialize with other siblings of preemies, eat pizza and play. And, they could see their brother. There were 86 babies in the NICU and special care nursery at the time, she said. The experience led to a full gamut of emotions for Chrystal. "I was holding my baby, but another couple comes in and their baby has died. Then you also see other people going home and you're thinking, why can't I take my baby home?" The hospital plans to construct individual rooms in the future. Yet, while there were "no private moments" in the NICU, Chrystal said she met "many wonderful people." They included the primary nurses "who promise to be there from start to the end," and other mothers, who could relate. Common for preemie boys, Bjorn underwent hernia surgery in addition to many tests which indicated that his brain and heart were developing. It was 10 days after the surgery that the family was told he could go home with them, to join his brothers, the two dogs, three cats and the fish. The couple's sons were jubilant. They went from seeing their brother once a week - if they did not have a cold and had not been near someone with a cold - to being able to see him as an everyday part of the family. A week later, Bjorn had to return to the hospital because he caught a cold and stayed overnight. He will still need another hernia surgery. Full from his bottle, Bjorn has started to doze in his mother's lap. His head lolls a bit to the side. He arrived home with monitors. It was his lifeline, and Chrystal's. "I was afraid to be without our nurses," she said. But the constant beep, beep of the monitor, ensuring that Bjorn was breathing, was a comfort. There was not much sleep at first, but Bjorn and his parents rest more comfortably at night now. He does not need to be on the monitor unless he gets a cold. Jacob adores and is very protective of his youngest brother. Just recently, the family was in a local store picking up necessities when an employee ran up to touch Bjorn and tell him how cute he is. Jacob immediately intervened, declaring "Please don't touch my brother, he's fragile." Jace and Chrystal are quite aware that Bjorn is not totally clear of the woods that surround a preemie, with the potential of many complications appearing at any time in life. He faces his next eye exam in June. Children born prematurely can suffer from retinopathy of prematurity, which can lead to blindness, but his exams so far have been good. They are also more susceptible to attention deficit disorders, Chrystal said. "He doesn't have CP or cystic fibrosis," she said. "A lot of it you don't know until he grows up.... We'll watch and wonder." But the Swensons are at a good point in their journey now. "It's kind of like a miracle that he's here," Jace said. "It's like winning the lottery, having healthy children." "So far, so good with this guy," he said, as Chrystal passed Bjorn to him. Chrystal wants other mothers and families facing similar situations to know her family's story. "I just personally really felt alone, even though I was surrounded by all those people," she said. "I just wanted to hear from someone that they had a 1 pound, 11 ounce baby. That there's not a horrible story." Today, Chrystal proudly declares that she cannot imagine life without Bjorn, that her life is that much richer. "My first son is gifted, my second son is gifted in a different way," she said. "My third son is a gift." SUSAN LaHOUD can be reached at 508-236-0398 or at slahoud@thesunchronicle.com.