On June 19 Courtney Rose Jackson’s parents placed her on the dining room table, smack in front of her first birthday cake. She fixed the confection with an expression of utmost seriousness. Then, just as her mother, Jennifer, 26, remarked, “Uh-oh, she’s going to grab the cake,” the 1-year-old lunged.
After tasting her icing-coated fingers, Courtney opened her blue eyes wide and burst out laughing. A circle of relatives looked just as amazed. “A year ago it was hard to believe she was even going to make it,” said her father, Chris, 27. “She was so small.”
When Courtney came into the world, after only 23 weeks in her mother’s womb, she weighed 460 grams—a fraction over 1 lb. Her heart was the size of a child’s knuckle and a mere eight teaspoons of blood flowed through her 11-in. body. Just a decade ago, Courtney, known as a micro-preemie, probably would not have survived. Even today, at many U.S. hospitals doctors choose not to treat infants born before 24 weeks and weighing less than 500 grams (about 18 oz.). Though no hard numbers exist, doctors agree that for the earliest preemies the odds of survival are slim. “These babies really don’t have good success at all,” says Dr. John Widness, a neonatal pediatrician at Children’s Hospital of Iowa, one of the few facilities whose policy is to try to save them.
But geography was on Courtney’s side. Children’s Hospital is two hours from her parents’ Bloomfield, Iowa, home. “Twenty-three weeks in most parts of the United States is still considered a gray area, the edge of life,” says Dr. Edward Bell, the hospital’s director of neonatology. “We are almost at the point where we consider it routine to save 23-week babies.”
That is not to say, Bell cautions, that doctors at his hospital will automatically treat a micro-preemie, who stands a 25 to 30 percent chance of suffering severe handicaps such as cerebral palsy and blindness. “There must be an agreement with the parents,” he says, “that we can stop treatment if things are not going well.”
In Courtney’s case, her mother was unable to make any decisions: She was fighting for her own life. On the evening of June 18, 2001, Jennifer, the director of a daycare center, had a splitting headache and was vomiting once an hour. Chris, a carpenter, insisted that she call her obstetrician, Lynn Birchmier. As Jennifer spoke to her, Birchmier recalls, “all of a sudden she started making this high-pitched moaning noise.”
Jennifer had suffered a seizure, the first of four she would endure before she was eventually taken by ambulance from a medical center near her home to Iowa City, 95 miles away. As Birchmier suspected, Jennifer had eclampsia, a condition that causes blood pressure to soar, resulting in strokes, brain swelling and kidney failure. Doctors don’t know what causes eclampsia, but if left untreated it would have killed Jennifer, as it does three women for every 200,000 births. The only cure is to deliver the baby.
When she arrived at the hospital, Jennifer was semicomatose, and within hours doctors were gently asking Chris whether they should try to save his daughter. “He had to make some tough decisions alone,” says Dr. Wendy Hansen, Jennifer’s obstetrician at Children’s Hospital. “At less than 24 weeks, some couples would say no because they don’t want the prospect of a handicapped child. Chris was carrying the world on his shoulders, but didn’t let it show.”
Chris told the team, “I want you to do everything you can to save my wife and our baby.” At 1:19 p.m. on June 19, with six doctors and three nurses in attendance, Courtney was born by cesarean section. There were no visible birth defects. ”She is,” Hansen recalls thinking, “a perfect little creature.”
While the obstetricians concentrated on Jennifer, a pediatrician intubated Courtney, whose undeveloped lungs made breathing a struggle. “As we put the tube in her tiny mouth, she reached up and hit our hands away,” says pediatrician Nicole Schmidt. “She showed she was a fighter.” The infant was then whisked to the neonatal intensive care unit (NICU), where she was hooked up to a ventilator and monitoring machines and covered in plastic wrap for warmth. But she was hardly out of danger. “Never trust a preemie,” Schmidt says.
She was right. Four days later doctors discovered that Courtney had a serious condition called patent ductus arteriosus, in which a blood vessel in the heart fails to close, causing the lungs to fill with fluid. Doctors tried to correct the condition with medication, but warned that surgery might be necessary.
While Chris spent his time shuttling between his wife’s room and the NICU down the hall, Jennifer wasn’t emotionally or physically strong enough to visit her daughter for two days. Though her blood pressure soon returned to normal, her mind remained foggy. “I felt so out of it, even though Chris told me over and over again what had happened,” she says. “I didn’t even expect to have a baby for another three months.”
When she saw Courtney, whose face and body were barely visible behind a mass of medical equipment, the young mother was terrified and mute. Finally, with just one finger, she touched her baby for the first time. “I was in a state of shock,” she says. “It was scary.”
Like all neonatal intensive care units, the one at Children’s Hospital can be intimidating. Because the babies have breathing tubes stuck down their throats, their cries can’t be heard. But the high-tech machines that keep them alive are rigged with alarm bells to warn the staff of problems, and the cacophony often terrifies parents.
But the NICU nurses, while attending to all the details necessary to keep their fragile charges alive, also find time to sing to the infants and stroke their tiny limbs. The combination of high-tech care and hands-on tenderness has had results: Of the two dozen 23-week preemies treated at Children’s Hospital between 1996 and 2000, 18 survived. “So much of what we do is based on gut instinct and not on numbers,” says Kristin Ward, one of Courtney’s nurses.
For Jennifer, that meant a chance to cradle her daughter for the first time, 27 days after she was born. Normally, parents can’t hold preemies until they’re in stable condition, which can take a month. But after it was determined that medication wasn’t solving Courtney’s heart problem—and that she would have to undergo surgery—neonatologist John Dagle made an exception. He helped place Courtney and her tangle of wires in her mother’s lap. Jennifer stared into her daughter’s eyes and whispered, “Hi, sweetie.” When Courtney was back in her crib, Jennifer thanked Dagle, adding, “I’m happy now.”
The next day doctors anesthetized the tiny girl, swathed her body with Betadine and placed her on her side. The operation, which usually takes one hour, lasted 42 minutes longer because nurses had to go searching for a rib spreader small enough to use on Courtney. Surgeons located her heart and clamped the vessel shut with a 3mm metal clip. Afterward Courtney displayed her usual feistiness. When she awoke from the anesthetic, she yanked out her breathing tube and waved it at the nurses, setting off alarms. “She is definitely her mother’s daughter,” says Chris. “She lets you know when she doesn’t like something.”
And, like her mother, when she does. Jennifer knew she would marry Chris by their second date. “He cared for everyone so much, and I loved his sense of humor,” she says. Though they had both grown up in Bloom-field, a three-stoplight town of 2,580, the couple met for the first time in 1996 in the parking lot of the local Pizza Hut, where Jennifer was a waitress and Chris—then studying physical therapy at Truman State University—was hanging out with pals. He admired her devotion to her younger brother and two sisters, whom she had cared for while their divorced mother worked nights, and was amused by her obsession with the Tasmanian Devil cartoon character. Good thing: When they wed in May 1997, Jennifer says, “I wore a long white satin dress that Chris’s grandmother made and Tasmanian Devil tennis shoes.”
For four years they tried to have children. Jennifer finally became pregnant, but miscarried in December 2000 after just six weeks. She was pregnant again the next month, this time with Courtney. Everything went smoothly until week 23. “Jennifer had no bad habits,” says neonatologist Bell. “She was just unlucky.”
Her luck improved—though a bit too slowly for her taste. After three months, Courtney was still not ready to leave the hospital, and her parents were exhausted by the four-hour round trip they made several times a week from their home. Though Courtney’s care, which has so far topped $547,000, is paid by Medicaid, Chris still had to work full-time and Jennifer hated staying overnight on the ward without him. The doctors declared that Courtney couldn’t leave until she was off the ventilator, could warm herself without an incubator and take all her nutrition from either a bottle or her mother’s breast. When Jennifer, who had been pumping and freezing her milk since Courtney’s birth, was told that reaching that stage would likely take a year, she declared, “I am going to prove the doctors wrong.”
In fact, her daughter did. Despite a bout of jaundice and a paralyzed vocal cord resulting from the surgery (doctors expect it will have no long-term effect on her voice), Courtney was well enough to be released after five months. “Oh, I can’t wait!” said Jennifer. “It’s been awful going home without our baby.” Though Chris admitted to being nervous, he and Jennifer felt confident enough to take over their daughter’s care after nurses taught them how to operate her oxygen tank and read her heart monitor.
The next day, the Jacksons celebrated Courtney’s homecoming by hosting Thanksgiving dinner for their extended family. Said Chris’s overjoyed mother, Debbie Van Horn, 49: “Now everyone can settle down and just enjoy her.” Chris and Jennifer refused to let Courtney out of their sight for a moment. Even now, she sleeps in a wooden cradle next to their water bed.
Courtney still requires oxygen, but her lungs are getting stronger, and unlike most micro-preemies, she has not had to be hospitalized for a respiratory illness. She weighs 18 lbs. 1 oz.—approaching the normal range for her age—partly, says Chris, because “she gobbles down sweet potatoes and banana pudding like there’s no tomorrow.” Although it is too early to tell whether Courtney will have learning disabilities—another common problem among micro-preemies—so far she shows no signs of developmental delays. “She’s doing beautifully,” says pediatrician Schmidt. “She may be walking before we know it.”
These days Courtney accompanies her mother to work at the daycare center, where she plays endlessly with Big Bird and delights in repeated readings of Goodnight Moon. She also adores being the center of attention—but come Christmastime, if all goes as expected she will have to make room for a baby brother. Jennifer is being monitored closely by the doctors at Children’s Hospital. Meanwhile the Jacksons watch gratefully as their firstborn grows into a little girl. “I can have the worst day,” says Chris. “But when I come home and look at her, I’m in a good mood.”
Giovanna Breu in Bloomfield and Iowa City