Tiny babies, fragile families

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statesman.com/hsfootball. See more scores .... Austin American Statesman WORLD NATION Saturday, September 8, 2007 ..... VQ DBSF 4IF XBTO U SFGFSSFE.
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took no action against the former St. Stephen’s chaplain, according to a timeline released last week by the diocese. According to the timeline, an investigation this year found at least nine people

— including one from Houston not publicly acknowledged until now — who claim to be victims. Also, for the first time since the diocese announced the allegations in May, the former head of St. Stephen’s, Allen Becker, who had received allegations from students in the 1960s, has issued a public apology, saying he “should have responded differently.” Tucker, who retired in 1994, will face charges in a church trial unless he admits 4FF"#64& "

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#Z"OESFB#BMM Adrienne Nash writhes on a gurney in a speeding ambulance, gasping her way through another contraction. Take deep breaths, the emergency medical technician tells her; I know it hurts. Adrienne is 24 weeks pregnant and in full labor. It’s too soon. The boy in her belly — with his immature brain, primitive lungs and translucent skin — isn’t ready for life outside the womb. It’s Dec. 28, 2003. The baby isn’t due until April 12. But tonight, he will be born. And tonight, 50%":&BSMZBSSJWBM he might die. CFHJOTMPOHTUSVHHMF As the ambulance races toward St. Luke’s Baptist Hospital in San Antonio, Adrienne 46/%":'PS clutches the EMT’s hand and clings to the QBSFOUT TUSFTTJT sound of her husband’s voice coming from the front passenger seat. The ambulance IJHI BOEIFMQJT hits a bump, and another contraction sears TDBSDF through Adrienne’s abdomen. Hurry, she thinks. Hurry, hurry, hurry. The 26-year-old Austin woman and her 34-year-old husband, Dave, had been visiting her family in San Antonio when the labor pains began. Like most parents of premature children, they knew next to nothing about the growing number of children who are born too soon. One out of eight babies in this country arrives prematurely. That’s 500,000 infants born before 37 weeks in the womb, a num-

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1SFFNJFTCSJOHUPVHIDIPJDFTGPSEPDUPST $POUJOVFEGSPN" ber that has increased 30 percent since 1981. And technology is allowing doctors to save more of them at an earlier age: Normal gestation is 40 weeks; many babies born at 23 weeks now survive. But prematurity remains the leading cause of death for newborns, killing more than 10,000 each year. Those who survive have a higher risk of cerebral palsy, mental retardation, poor vision, severe acid reflux, learning disabilities and behavior problems. Prematurity outpaces autism, which affects 1 in 150 children; multiple sclerosis, which hits 1 in 700; and Down syndrome, which occurs in 1 out of 733. But despite the prevalence, most parents-to-be know little about premature babies until they have one. Standard prenatal care does not include information about preterm birth or its aftermath. Most parents are woefully uninformed about the medical problems their babies might face after they come home. Though doctors have pinpointed some common causes of prematurity — the growing use of fertility drugs, the surge in elective Caesarean sections that scar the uterus, the rising age of first-time mothers — they still can’t explain what short-circuits many pregnancies. In 40 percent of preterm births, doctors have no idea why the baby was born early. “There is a need to address premature birth in our country with the same sense of urgency and focus that has been brought to other threats to children’s health, including secondhand tobacco smoke, rising rates of obesity and lack of health insurance,” said Dr. Jennifer Howse, president of the March of Dimes.

/PFYUSFNFNFBTVSFT Adrienne is lying in a hospital bed when her water breaks. Oh, my God, she thinks. The baby is coming. A kindly doctor appears and comforts the couple. The baby can stay in there a few days while we give you steroids to mature his lungs, he explains while preparing the ultrasound machine. Then the doctor sees that the baby’s umbilical cord has fallen into the birth canal. If it constricts, it will cut off blood and oxygen. The cord is also wrapped twice around the baby’s neck. The baby has to come out now. Nurses prep Adrienne for a Caesarean section. Dave sits beside his wife in the operating room, holding her hand, stroking her hair and whispering words of comfort. If your baby is not breathing when we remove him, we will not take extreme measures to save him, the doctor says. Adrienne nods from the operating table. Nurses stand ready to assist the doctor. A neonatologist and his team wait nearby, preparing to jump into action. The surgery begins.

&UIJDBMEJMFNNBT Twenty-five years ago, doctors might not have attempted to save the Nashes’ baby. In the 1980s, babies born before 28 weeks rarely survived because their lungs collapsed shortly after birth. Then came artificial surfactant, a replacement for the natural soapy substance that allows the lungs to remain open. Babies once doomed to death from respiratory distress could now be resuscitated and helped to breathe on their own. Then came better ventilators, better nutrition and better incubators. Today, doctors can save babies that barely tip the scales at 1 pound. Babies born at 25 weeks now have a 50 to 80 percent survival rate; 24weekers survive 40 to 70 percent of the time; 23weekers have a 10 to 35 percent survival rate. But as the survival rate grows, so does the number of preterm infants with lifelong disabilities. Though some develop normally, others need years of intensive and expensive medical care. The Institute of Medicine, a national nonprofit that provides reports on health issues for the U.S. government, estimates that premature births cost more than $26 billion per year in medical, rehabilitation and lost labor expenses. There is no medical standard that says how old a baby must be before it can be resuscitated. Most U.S. doctors refuse to resuscitate babies born before 23 weeks gestation — but there are exceptions. One Florida baby made headlines last year when she survived her birth at 21 weeks. Cases like that have become fodder in the abortion debate, said Arthur Caplan, a bioethicist at the University of Pennsylvania. The point in a pregnancy when babies are being aborted and being saved has overlapped; abortion opponents point to the success stories as proof that even 21-weekers are viable, while supporters of abortion rights dismiss those cases as medical anomalies. “These babies have become tiny soldiers in the war on abortion,” Caplan said. But in the delivery room, doctors have to make their own difficult ethical decisions, said Dr. John Loyd , a neonatologist at Seton Medical Center. Neonatologists size up a newborn’s weight, appearance and movement in a matter of seconds. Is the baby showing signs it’s fighting to live? What are the outcomes for similar preemies? Doctors also consider what kind of long-term support babies will need after they go home. “Can we, should we and why?” Loyd said. “There is a cost to all of this, and I don’t mean financial.”

QPVOE PVODFT Adrienne lies on the operating table, clinging to her husband’s hand. I love you, he whispers. Everything will be OK.

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Medicine brought Dave and Adrienne together. The pair met in January 2001 at St. David’s South Austin Hospital, where they both worked as surgical technicians. He was a lanky Grateful Dead fan who loved surfing and had traveled the country. She was an athlete from San Antonio who wanted to see the world. Adrienne liked his sweet nature and quiet confidence. Dave liked her outgoing, assertive personality. They became good friends. Their first outing

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mal. Even when doctors discovered a benign fibroid tumor in Adrienne’s uterus, they reassured her that it was nothing to worry about. Now in the delivery room, Dave waits to see whether his child will live or die. And then he hears it: a single, almost kitten-like mewl. Elated, Dave stands up to see his boy. I have a son, he thinks. I’m a father. Then he looks at his son more closely. He is gray, his little face contorted in a near-silent wail. His eyes are fused shut. A bruise stains his upper back, which was pressed against Adrienne’s tumor. His arm — which had been trapped between his neck and the umbilical cord — looks black and dead. That arm saved his life. Without it, the cord would have strangled him. Still, at 1 pound, 15 ounces, the baby weighs less than a cantaloupe.

,FFQJOH#PEJFBMJWF was at a Taj Mahal concert at Stubb’s in the pouring rain. He held her hand as they ran through the puddles. When Dave took a job in Hawaii a few months later, Adrienne followed him. The pair soon moved to Austin so Dave could attend nursing school. They married in San Antonio on Dec. 14, 2002. Within a few months, Adrienne was pregnant. The possibility of a premature birth never entered their minds. Adrienne was young, active and physically fit. She didn’t smoke or drink. She took prenatal vitamins and visited her doctor regularly. Everything about her pregnancy seemed nor-

It is 3 a.m. when a nurse rolls Adrienne’s wheelchair into the neonatal intensive care unit. Heart and oxygen monitors beep softly. Babies lie in Plexiglas cribs. Nurses scribble on charts. Adrienne scans the room, looking for her baby. By now, he has a name: Bodie Kai Nash. “Bodie” comes from Bodie Lighthouse in North Carolina, which symbolizes strength to them; “Kai” is a Hawaiian word for ocean because they both love the sea. Bodie is in a small, open bed with an overhead warmer to keep his temperature stable. But be-

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fore Adrienne can stand, the nurse touches her hand and offers a gentle warning. He’s not going to look like you expect, she says. Adrienne steps up to the warmer and nearly gags. The front portion of Bodie’s skull, where the bones have not yet hardened, is sunken. His eyes remain fused shut. His skin appears gelatinous and raw. Wires and tubes cover his body. Dave joins his wife by Bodie’s bedside. Doesn’t he look great? he asks. They both know he is lying. The next morning, Bodie’s new doctor arrives. Does he have mental retardation? Adrienne asks. Will he have cerebral palsy? You’re jumping way ahead, the doctor answers. Right now, we need to focus on keeping Bodie alive for the next hour, the next day, the next week. The doctor explains the machinery and medications the staff is using to try to recreate the womb: a ventilator to pump oxygen into his lungs; an intravenous line for food; a temperature-controlled incubator to keep his body warm; cellophane stretched inches above his body to keep his skin moist; phototherapy lights to get rid of his jaundice. Because Bodie’s neurological system is so immature, every sight, sound and touch is amplified, the doctor explains. We’ll cover his eyes and keep the room as quiet as possible. All this should help Bodie’s brain and body develop, the doctor says. But the days ahead will be rough. Now Adrienne realizes with absolute clarity that her son could die. Even if Bodie survives, he might not develop normally. Approximately 80 percent of infants born at 25 weeks or younger have some kind of disability by age 6, according to a 2005 study published in the New England Journal of Medicine. Of those children, 41 percent had moderate to severe mental impairment, compared with only 2 percent of a group of full-term babies. None of that matters to the Nashes right now.

*TUIJTUIFFOE In the days after Bodie’s birth, Adrienne moves in with her parents in San Antonio to be closer to the hospital. Dave begins shuttling between Austin and St. Luke’s. Adrienne keeps vigil by Bodie’s bedside day and night, willing her injured son to heal. She strokes his arm softly to comfort him. Then a nurse kindly explains that even gentle touches can sting Bodie’s raw skin. Adrienne freezes, horrified. Oh, my God. I hurt my baby. Doctors tell her that Bodie’s patent ductus arteriosis — a blood vessel near the heart that typically closes at birth — is still open. The potentially life-threatening condition, common in preemies, causes extra blood flow into the lungs, putting pressure on the lungs and heart. Doctors try to fix the problem with medication, but Bodie’s kidneys start to fail. So on Jan. 12, doctors perform surgery on the 15-day-old infant. The next day, Bodie develops a serious blood infection. Doctors move him into an isolation room away from the other babies. Bodie’s skin grows gray. His swollen body lies perfectly still. He might not make it, the doctor tells Adrienne. She walks into the hallway and calls her husband in Austin. Dave, you have to come back. The baby doesn’t look good. Adrienne returns to Bodie’s hospital room, aching with guilt. It’s all my fault, she tells herself. If I didn’t have this tumor, Bodie wouldn’t be suffering right now. Doctors later confirmed $POUJOVFEPOOFYUQBHF

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that the tumor and her small frame triggered Bodie’s early birth. She puts her index finger in his hand and starts apologizing. I’m sorry, she whispers. I’m sorry I can’t make it better. Daddy is coming. Please don’t go. Hail Mary, full of grace ... Dave arrives at the hospital, sees his sick baby and feels his rage begin to build. How can God let this happen? He storms out of the hospital, walks behind a utility building near the parking lot and starts screaming. He curses and rages for at least five minutes. Then he collects himself and walks back into the hospital. At 5 p.m., a priest comes to baptize Bodie. Adrienne and Dave hold each other, crying in disbelief. Then they sit down and watch their son. This is it, Adrienne thinks. This is the end. But somehow, Bodie hangs on. Doctors eventually discover that Bodie’s PICC line — a catheter that delivers nutrition and medicine into a large vein near the heart — has shifted into his lungs, drowning him with the very liquids intended to save him. Doctors sew several chest tubes into Bodie’s skin to drain the fluid from his lungs. The swelling recedes. New antibiotics stop the infection. The worst is over. Over the next three months, Bodie’s lungs grow stronger, his skin thicker, his brain more mature. His bruised arm heals. In February, Adrienne and Dave transfer the baby to Seton Medical Center in Austin to be closer to home. On March 15, 2004, four weeks before his original due date, Bodie leaves the hospital for good. He weighs 5 pounds, 11 ounces. His medical bills, which are covered by insurance, exceed $1 million. Bodie comes home with a nasal gastric tube, a feeding tube that runs through the nose and into the stomach, because he still hasn’t mastered bottle feeding. But Adrienne and Dave are thrilled. Finally, their son can sleep in his own room, wear his closet full of neatly hung clothes, see his bedroom’s freshly painted mural of Bodie Lighthouse. On his first day home, snug in his white and blue bassinet, Bodie sleeps, eats and sleeps some more. Day one is a good day. Day two kicks off two years of misery.

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/POTUPQUFBST On his second day home, Bodie Kai starts crying inconsolably. He cries when he eats. He cries when he doesn’t eat. He cries when his parents hold him. He cries when they put him down. What am I doing wrong? Adrienne wonders. Why can’t I make him stop crying? On his second day home, Adrienne is changing the baby’s diaper when she sees that his scrotum is black. It is a bilateral inguinal hernia. Bodie’s intestines have squeezed into his scrotum through a hole in his abdominal wall. Slowly, Adrienne begins to massage her son’s scrotum, gently pushing and prodding

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They avoid public places between fall and spring so their children don’t catch respiratory syncytial virus, a common, cold-like virus that can be fatal to preemies. Adrienne spends her days alone with a sick, screaming baby. But fleeting moments of joy keep her going. Sometimes, when she rocks her baby on an old Boston rocker in his room, Bodie falls asleep on her chest. Adrienne breathes in his fresh baby smell, rubs his back, kisses his head and prays. Please, God. What have I done for him to deserve this? I’ll go to church more. I’ll be a better person. Please don’t let him suffer anymore.

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his intestines back into his abdominal cavity. Four days later, Bodie returns to the hospital for surgery. When he comes home, he starts projectile vomiting. It takes three months before doctors diagnose Bodie with severe acid reflux, another common ailment for preemies. Whenever he eats, stomach acid rises into Bodie’s esophagus and burns his throat. Doctors prescribe drugs. Adrienne and Dave constantly hold Bodie upright because it seems to ease his pain. They lay him face down on the dryer, where the warmth and vibration soothes his stomach. They elevate one end of his crib and prop him in place with 5-pound bags of rice. Nothing works. Even after they go home, the earliest preterm babies remain medically fragile. Some use oxygen tubes, breathing monitors or blood pressure machines. Most need regular visits to pediatricians, gastroenterologists and pulmonologists. Parents, meanwhile, become amateur nurses. They flick air bubbles out of syringes and squeeze medication into their babies’ bottles.

 CBCJFTBSFCPSO QSFNBUVSFMZFBDIZFBSJO UIF6OJUFE4UBUFT o FBDIEBZ Then she rebukes herself: How could I question my faith like that? Eventually Bodie, who can now bottle feed, stops using his feeding tube. But when he fails to gain enough weight, doctors tell Adrienne to put it back in. Adrienne tries — but Bodie won’t let her. He squirms, flails and fights to keep that tube out of his nose. Does it really hurt that bad? Adrienne wonders. She walks into the bathroom, looks in the mirror, slides the tube down one of her nostrils and into her throat. First she gags. Then she vomits. Then she cries. Eventually — after the insurance company sends a nurse to help — Adrienne gets the tube down Bodie’s throat.

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"MBVHI UIFOBTIPDL Finally, after five months of pain and feeding problems, Bodie has surgery to help him keep his food down. Doctors also surgically insert a tube that allows formula and medicine to be injected directly into his stomach. Bodie starts seeing therapists four times a week: physical therapists to strengthen his muscle tone; occupational therapists to help him eat; speech therapists to strengthen his mouth muscles. And slowly, Bodie starts to heal. His acid reflux relaxes. He starts to smile. On May 27, 2005 — during a tickling session on Adrienne’s bed — Bodie laughs for the very first time. He is 17 months old. Seven months later, he takes his first bite of solid food from his father’s chocolate birthday cake. By now, Adrienne has promised herself she will never give birth to another child. Bodie has suffered so much — all because he was born too soon. She can’t do it again. She doesn’t even want to try. Then she gets pregnant. With twins. BCBMM!TUBUFTNBODPN

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WASHINGTON — The FBI’s terrorism investigations cast a much wider net than the agency has previously acknowledged. Newly obtained bureau records show that it relied on telecommunications companies to analyze phone-calling patterns of the associates of Americans who had come under suspicion. The documents indicate that the FBI used secret demands for records to obtain data not only on people it considered targets but also on the network of people that targets in turn were in contact with, known as their “community of interest.” The bureau recently stopped the practice in part because of broader questions raised about its aggressive use of the records demands, which are known as national security letters, officials said Friday after being asked about it. The information on the network of asso-

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drienne Nash leans over her squirming infant in a sleep-deprived fog, changing a diaper and glancing at the clock. “It’s 5 p.m.,” she says dully. “In 12 hours, it will be 5 a.m.” This is how she measures her days: hour by hour, bottle by bottle, diaper by diaper. It is January 2007, and Adrienne and her husband Dave are raising .JTT1BSUPG three premature boys in UIJTTFSJFT  their South Austin home. 3FBEJUBU Their infant twins and 3TUBUFTNBO year-old toddler need conDPNQSFFNJFT stant attention: doctor appointments, prescription drugs, physical therapy sessions, special formula to ease the painful acid reflux that burns their throats. Diapers rule Adrienne’s days. Screaming babies plague her nights. Adrienne can’t remember the last time she laughed. Am I depressed? she wonders. This is the part of prematurity that blindsides families: the emotional and psychological fallout.

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Studies show that mothers of premature infants are more likely to experience postpartum depression than parents of full-term babies. Many women still struggle with psychological stress a year after giving birth, according to a March 2007 study in the health journal Child: Care, Health and Development. Among their symptoms: fatigue, depression, anxiety, social isolation, guilt. But only a handful of organizations across the country are devoted to helping parents of premature babies. And in Travis County — where nearly 2,000 premature babies are born each year — resources are scarce. “It’s sobering to realize what a lack of support there is out there for parents,” said Ellen Balthazar, executive director of Any Baby Can, an Austin nonprofit that helps babies with health problems and their families. Adrienne doesn’t typically share her misery with outsiders. She smiles and chats when people come to visit. Then they leave, and it’s back to the drudgery. In 12 hours, it will be 5 a.m. The start of another day like this.

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This is the year the self-consciously weird Austin City Limits Music Festival, which kicks off three days of crowds and fun Friday, goes self-consciously green. Consider: A 20 percent mix of biodiesel in generators throughout Zilker Park, such as the ones that power the big, bulbous light towers. Fewer forks and “picnic packs” and more hand-held foods. Compostable or biodegradable paper plates for all food. And — not as ominous as it might sound — recycled toilet paper in the portable johns. Promoter C3 Presents has always taken

5IFTFDPOEUJNFBSPVOE Two-and-a-half years earlier, Adrienne and

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ST. GEORGE, Utah — Woodrow Johnson was 15, and by the rules of the polygamous sect in which his family lived, he had a vice that could condemn it to hell: He liked to watch movies. When his parents discovered his secret stash of DVDs, which included the “Die Hard” series

and comedies, they burned them and gave him an ultimatum. Stop watching movies, they said, or leave the family and church for good. Television and the Internet, considered wicked, were also banned, as were short-sleeve shirts — a sign of immodesty. Staring at girls was not allowed; neither was dating them. And so Woodrow made the wrenching decision to go. Ten months ago, with a seventh-grade education and a suitcase of clothes, he was thrown into an unfamiliar world that he had been taught to fear. Over the past six years, hundreds of teenage

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-BDLPGDPOUBDUXJUIOFXCBCZDBOIVSU $POUJOVFEGSPN" Dave Nash’s first son, Bodie Kai, was born at 24 weeks. The 1-pound, 15-ounce infant was 16 weeks early. He spent three months in the hospital, followed by two years of surgeries and severe acid reflux. Adrienne and Dave couldn’t bear to watch another baby suffer like that. They swore Bodie would be their only biological child. The twins were a scary surprise. Adrienne knew her boys would come early. She’d already had one preemie, which, doctors say, put her at risk for having another. And she still had the benign tumor in her uterus that doctors say contributed to Bodie’s early birth by pressing against him in the womb. So this time, Adrienne was extra careful. At 18 weeks, she stopped working as a surgical technician at Seton Medical Center. She rested as much as possible. But in August 2006, Adrienne went into labor. She was 24 weeks pregnant — just like with Bodie. But this time, doctors at Seton rushed to postpone Adrienne’s labor. They injected her with a steroid to help mature the twins’ lungs. They put her on magnesium sulfate, a powerful muscle relaxant used to slow contractions. But while the drug can effectively postpone labor, it can also cause miserable side effects: lethargy, muscle weakness, double vision, constipation and swelling. Some mothers refuse to stay on the drug for more than 24 hours. Adrienne took it for 13 days. For days, she lay in her hospital bed, anguishing over her inability to carry her babies to full term. Guilt consumed her. In one study of 549 mothers by the March of Dimes and Babytalk magazine, 64 percent said they felt guilty for delivering premature infants — even if they had done everything their doctors advised. On Sept. 2, even the magnesium sulfate couldn’t keep the twins from coming. After an emergency Caesarean section at Seton, Luke arrived at 9 p.m., weighing 1 pound, 15 ounces. His brother Quinn followed at 1 pound, 13 ounces. Two extra weeks in the womb had helped mature their lungs, skin and brains, but the boys were still critically ill and lay in the neonatal intensive care unit, their tiny bodies covered in tubes and wires. A few days later, the news got worse: Quinn had two intraventricular brain hemorrhages, bleeding in the brain that can lead to seizures, cerebral palsy or mental retardation. The bleeding was relatively minor and healed itself. But doctors said it could be years before they knew whether the hemorrhages had caused Quinn permanent neurological damage. With her husband at work, a toddler at home and twins in the hospital, Adrienne’s stress began to overwhelm her. Every day was the same. Up at 7 a.m. Feed and clothe Bodie. Take him to day care. Go to the hospital. Hold the twins. Pray. Pick up Bodie from day care. Cook. Clean. Collapse about midnight.

%SPXOJOHJOTUSFTT A 2005 study by Stanford University found that 28 percent of parents showed symptoms of acute stress disorder while their preemies were hospitalized. The anxiety disorder — which is triggered by a traumatic event — causes some people to become numb or detached. Some block out parts of the event. Others emotionally relive it over and over. In extreme cases, that stress can make par-

ents hurt their babies. According to a 2006 study by the University of Warwick in England, premature and low-birthweight babies are more likely to be abused than full-term infants. Meanwhile, bonding with a sick baby who can’t be touched or cuddled is extremely difficult, said Jack Turman, founder of the Center for Premature Infant Health and Development at the University of Southern California. “It hugely interrupts the basic maternal relationship between mom and baby,” he said. “I don’t think we really understand what we’re doing to a mother when you take her baby away from her for 60 days or whatever.” NICU staffers across the country do what they can to help parents connect with their children, like calling infants by their first names and telling parents about the child’s personality. “They get a very skewed sense of what a baby is,” said Dr. Sonny Rivera, medical director of the NICU at St. David’s Medical Center in Austin. “It almost seems unreal, so we have to make it real.” For Adrienne, the trauma hit when she least expected it. One evening about midnight, as she lay in bed at home watching an animal rescue show on television, she saw several abused, malnourished kittens appear on screen. An image of Quinn’s sickly body flashed through her mind. Quinn needs his mommy, and I’m not there, she thought. She called one of the NICU nurses on duty. Could you please tell my son I love him? And, if you don’t mind, could you please sing him a song? But just as Quinn started to heal, doctors discovered four blood clots near Luke’s heart. Tissue plasminogen activator — a blood-clot dissolver not approved by the Food and Drug Administration for use on preemies — was the only thing that could save him, they told the Nashes. But the drug’s side effects could kill him. I can’t just let my son die, Adrienne said. We have to try something. Doctors transferred Luke to Brackenridge Hospital for the procedure. On Sept. 26, 2006

— 90 minutes before he was to receive the drugs — a priest came to baptize Luke. The scene was painfully familiar to the Nashes. Two years earlier, a priest had baptized Bodie in the NICU as he lay dying from a severe blood infection. I can’t believe this, Adrienne thought. I can’t believe we’re doing this again. At 3 p.m., minutes before the procedure was to begin, an echocardiogram showed that the two most severe clots had disappeared. The next day, the other two clots were gone too. Was it all a mistake? A miracle? A medical anomaly?

QFSDFOUPGQBSFOUT TIPXFETJHOTPGBDVUF TUSFTTEJTPSEFSXIJMF UIFJSQSFNBUVSFJOGBOUT XFSFJOUIFIPTQJUBM No one could say. But Luke was safe. They transferred him back to Seton Medical Center to be with his brother. The months passed. Quinn wasn’t growing fast enough. Luke had hernia surgery. But by Thanksgiving, Quinn was home. Then, on Dec. 12, snug in his car seat and winter hat, a wide-eyed Luke left the hospital. That night, Adrienne sat in the red glider in the twins’ bedroom, holding Quinn. Can I hold both babies? she asked her husband. It is a question born of habit. For months, doctors had dictated Adrienne’s relationship with her children: when she could see them, hold them, feed them. She had no control. With both babies cradled in her arms, Adrienne glowed. She couldn’t stop smiling. Where’s Bodie? she asked. Bring him in here, too.

Finally, after so many months, they were all together. We made it, Adrienne thought.

)PNFBHBJO Luke lies on his mother’s soft white bed, screaming until his face is feverishly red. The baby has a hernia that is pushing his intestines into his scrotum, swelling it to the size of a small apple. He’s eating poorly because of acid reflux. He hasn’t had a bowel movement in five days. The doctor has ordered Adrienne to give the baby several liquid glycerin enemas to loosen his stools — a procedure that clearly hurts him. He’s been home nine days. Adrienne kneels at the edge of the bed, calming her son and preparing the next enema. For now, she is not a mother. She is a medical professional helping a patient. Then Adrienne touches his bottom. Luke gasps and holds his breath, his amber eyes wildly darting around the room. He knows what is about to happen. He screams when it does. The next day, Luke returns to Seton for hernia surgery. Both twins have reflux, and finding the drugs that work best for them has become an at-home science project. Adrienne constantly calls their pediatrician. She knows the Walgreens and People’s Pharmacy phone numbers by heart. Even with their medications, the twins must be fed in an upright position. That means feeding them in alternating shifts. Adrienne rarely sleeps. One or two hours a night is a luxury. Dave is now working 56 hours a week. He spends his off hours washing dishes, cooking meals, folding laundry and entertaining Bodie. The toddler, who still takes medicine through a feeding tube in his stomach, hates his brothers’ constant crying. Dave routinely takes him to the park so Adrienne can focus on the twins. Relatives drive from San Antonio and Dallas to help manage the chaos, but Adrienne loathes asking people to rearrange their schedules and stay up all hours with vomiting babies. She guzzles Red Bull and coffee and pops multivitamins. She binges on whatever is fast and easy: cheese, crackers, Oreos. To save time and money, Adrienne has done away with her trademark blonde highlights. She barely recognizes herself. I hate my life, she thinks. One minute she’s angry at Dave for getting her pregnant with twins. The next she is weepy and depressed, overwhelmed by her fussy twins. Then she’ll chastise herself: What right do I have to complain? Early Childhood Intervention — a federally funded program for developmentally delayed and disabled children — comes once a week to provide physical and occupational therapy for Luke, who is fussier and more sensitive than his twin. Quinn, despite his brain bleeds and rigid posture, seems on track for his gestational age. But like most NICU follow-up programs around the country, ECI does not provide mental health services for the parents. “The physical and developmental needs of the infant absolutely take priority,” said Turman, the Center for Premature Infant Health and Development founder. “The problem with this paradigm is that the infant is not going to be discharged and living independently. It is

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completely dependent upon the home environment for its development.”

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.BSSJBHFBOENPOFZ Dave is exhausted, too. He misses his old life with Adrienne. They used to travel, dance, hike, cheer for the Boston Red Sox together. They used to laugh. Now they don’t. Sometimes, during his dinner break, Dave calls Adrienne to vent. I’m so depressed, he says. The babies are sick. We’re broke. I’m tired all the time. But Adrienne is too stressed to listen. She brushes him off. Don’t tell me it’s awful, she thinks. I already know. Dave and Adrienne barely see each other anymore. He’s always working. She’s trapped at home with sick babies. They’re tired, stressed and snappish. The birth of a premature child can seriously strain a marriage. And it usually gets worse when the baby comes home. “People can hold it together in (a crisis),” said Deborah Simmons, a Minnesota-based marriage and family therapist who specializes in reproductive complications such as premature delivery. “They know they have to keep it together because they have to help their children.” But when the crisis is over, all the other emotions start to hit: the grief of missing a normal pregnancy, the trauma of unexpected labor, the fear of almost losing a child. If parents don’t face their feelings, Simmons said, it only gets worse. Her advice to couples: Take care of your marriage, or you’ll be divorced in a year. Talk to each other. Listen. Get counseling. “Either they get it together or the marriage goes in the toilet,” she said. The Nashes’ money problems aren’t helping matters. The thousands of dollars for medical co-pays, prescriptions and formula bills they’d charged on their credit cards are catching up with them. Creditors call day and night. After agonizing for months, they decide they have no choice but to file for bankruptcy. The frustration makes them fight even more. One night, during an argument, Adrienne lashes out at him. You’re not being strong enough for me. Dave is crushed. I work 56 hours a week, he thinks. I come home, cook, clean, help take care of the boys.

"GUFSNPOUITPGSBSFMZTFFJOHFBDIPUIFSBOETOBQQJOHBUFBDIXIFOUIFZEJE %BWFBOE"ESJFOOF /BTIIBWFDPNFUISPVHIXIBUUIFZTFFBTUIFXPSTUPGUIFTUPSNXJUIZFBSPME#PEJFBOEUXJOT -VLFBOE2VJOO IFSFDMJOHJOHUPUIFDIBJSXIFSFIJTQBSFOUTBSFTJUUJOH My wife is miserable. Now we have to file for bankruptcy. But over the next few months, life slowly starts to improve.

'PSQBSFOUT UIFTUSFTT PGIBWJOHBQSFFNJF JODSFBTFTXIFOUIFCBCZ DPNFTIPNF UIFSBQJTUT XBSO It is spring now. Dave takes a new shift at Seton that allows him to work fewer hours. The seasonal threat of respiratory syncytial virus — a common virus that can be fatal to preemies — is over and the family can spend more time outside. The Nashes go hiking in Zilker Park. They

visit friends and family. They go to the park and push the boys in their triple jogger. And then, something unexpected happens: Adrienne and Dave remember how much they like each other. One day in April, Adrienne looks at Dave as if she’s seeing him for the first time. Have I told you I love you today? she says. Because I do. I really, really love you. Dave smiles. You haven’t said that in a very long time.

#FHJOOJOHTBOEFOEJOHT On a late April afternoon, the Nashes get to show off their boys at Bailey Park. It’s Seton Medical Center’s 32nd annual NICU reunion. Preemie parents have trekked from across the state to reunite with the nurses and doctors who helped their babies make it out of the NICU alive. Hundreds of families wander throughout the Central Austin park near the hospital, bouncing in a moonwalk, eating ice cream, touring the hospital helicopter. Not every child here is a storybook success. There are toddlers with thick glasses from pre-

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Central Texas parents traumatized by premature birth have few places to turn when they need it the most: after their babies come home. Parents of premature infants often struggle with depression, anxiety and post-traumatic stress disorder, researchers have found. When infants are in the hospital, parents have access to a built-in support system: doctors, nurses and social workers. But that all disappears when families go home. Local nonprofits do what they can to fill the gap, but resources are limited and none have programs catering specifically to parents of premature babies. Any Baby Can, for example,

can afford to provide counseling for less than a dozen preemie parents. “There’s clearly a desperate need for this,” said Ellen Balthazar, Any Baby Can’s executive director. “These families are at risk for other problems if they don’t take care of their mental health issues.” Only a few nonprofits across the country serve preemie families. The Tiny Miracles Foundation in Connecticut, for example, offers parent mentors and support groups. In Springfield, Va., Preemies Today hosts playgroups and provides meals, care packages and online support. When Preemies Today was founded in 2003, by the mother of a preterm infant, the nonprofit served 22 families. Today it helps 350, and the number is growing, President Mary Beth Hazelgrove said.

“Parents are just craving for this interaction with people who share this experience,” she said. Many parents are turning to the Internet for support. Some sites, like the March of Dimessponsored www.shareyourstory.org, serve as a venue for parents to connect with and comfort each other. Others — such as www. thepreemieexperiment.blogspot.com — take on edgier subjects such as the ethical debate over resuscitating very young babies. But what parents really need are services that come into their homes, Balthazar said. “The people who need the help the most can’t possibly organize themselves to find and go to the class,” she said. “That’s why home-based services are so critical.” BCBMM!TUBUFTNBODPN

maturity-related sight problems, babies with oxygen tubes to assist their still-fragile lungs and children in wheelchairs whose severe brain bleeds gave them cerebral palsy. But to their parents, they are beautiful. Adrienne sits at a picnic table under a tree, feeding Luke and chatting with a nurse. Her blonde highlights are back. She beams as onlookers rave about the twins. Meanwhile, Dave chases Bodie around the park. Several weeks earlier, Bodie’s feeding tube had been removed, freeing him to do everything the other kids do. He climbs on the swings, jumps in the train ride, runs to the crafts table. Then he wants to go on the inflatable slide by himself. Dave, who is now holding Luke, stands at the bottom of the slide watching his oldest boy scale the inflatable ladder. Adrienne and Quinn join him. “Where’s Bodie?” Adrienne asks. Dave points to the top of the slide. Adrienne and Dave accept that they don’t know what the future holds for their sons. Maybe they will have the same learning disabilities, physical complications or behavioral problems that plague other preemies. Maybe Quinn will have cerebral palsy. Adrienne and Dave are ready for anything. From the top of the ladder, Bodie smiles at his parents, gives himself a little push and hurtles down the inflatable slide. Adrienne and Dave cheer wildly. He did it, Adrienne thinks proudly. Then he does it again. BCBMM!TUBUFTNBODPN

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