Saving Jason

By Lise Funderburg

May 2000

Jason Michael Waldmann Jr. weighed only 1.2 pounds when he was born in a hospital near Atlantic City on February 1. His heart didn’t beat. His lungs couldn’t draw breath. His eyes were fused shut. And his skin, red and translucent, was so delicate it rubbed off when touched.

Laurie Waldmann was 25 weeks pregnant when she gave birth to Jason. She remembers touching his foot before he was whisked away to have his heart jump-started, an I.V. line inserted and a breathing tube threaded down his tiny throat. She remembers her husband standing by her side throughout the ordeal and deciding then that she wanted to name the baby after him. But she doesn’t remember when doctors asked her if they should try to keep the baby alive.

There wasn’t time to fully explain to the frightened young couple that there’s no way of predicting how such premature babies will turn out. Among the possible outcomes: cerebral palsy, chronic respiratory problems, hearing and vision impairment, learning disabilities and mental retardation. Or not.

Jason and Laurie Waldmann, who met in high school, had been married only three months when Laurie, 23, got pregnant last August. They were living with her mother and stepfather in Mays Landing, N.J., and had planned to move into their own apartment. Jason, 22, enrolled in a computer course, and Laurie intended to do the same, so they could get better jobs than their high school diplomas allowed. What they couldn’t have planned for was having to make a life-or-death decision, but they didn’t hesitate when doctors asked the question.

Within three hours, baby Jason was being helicoptered to the neonatal intensive care unit of The Children’s Hospital of Philadelphia, the nation’s oldest children’s hospital and the closest one that had the technology and expertise that might save his life.

About 450,000 babies are born prematurely in the U.S. each year, but Jason is among the 25,000 considered extremely premature — 27 weeks of gestation or less. In the past 10 years, the edge of viability hasn’t changed much; it’s still between 23 and 24 weeks. But more of these micropreemies are surviving. “Ten or 15 years ago, these babies died,” says Dr. Istvan Seri, clinical director of newborn services at Children’s Hospital. “In the mid-’70s, if a 28-weeker survived, that was the standard.” In 1970, only 40 percent of babies born weighing less than 3.3 pounds lived. Now it’s more than 90 percent. And the success rate is likely to climb as researchers develop new treatments, more precise drug regimens and better machines to treat patients born too soon.

The technological derring-do is impressive, but is it a good idea? True, more preemies are surviving, but the proportion who end up with profound impairments has remained constant, about one in five. The cost to families, taxpayers, school systems and the rest of society can be enormous — in Jason’s first eight weeks of life, his hospital bill exceeds $500,000. But the benefits of saving such babies can’t be measured solely in quantifiable terms. The equation also involves hopes and dreams, religious beliefs, the capacity for love and the personal definition of quality of life.

In his first two weeks at the hospital, Jason Jr. will have blood drawn 49 times. By four weeks, he will have had 73 X-rays. Unlike other babies in the 42-bed neonatal intensive care unit — conjoined twins from Poland who have come to be separated, babies with diseases like the frighteningly named CHAOS syndrome, infants who will undergo open-heart surgery — Jason’s only challenge here is to grow. As simple as this sounds, it’s an extraordinary effort, both for him and for the medical team that will continue to tend him over the months to come.

“We try to simulate the womb as best we can in a little box with a cover on it,” says Bridget Cei, one of dozens of nurses who care for Jason. The box is an Isolette, a special incubator invented at Children’s Hospital. Jason wasn’t born with enough body fat to keep himself warm, so the Isolette, covered with a quilt that muffles sound and shuts out light, is kept at about 86°F. Portholes with hinged doors open only when Jason receives care or his parents want to touch or talk to him.

The best doctors can do for a preemie like Jason is to ease the trauma of having been pulled from the womb so soon. Their job is all the more difficult because almost every available treatment harms the baby, even as it keeps him alive. The intensity and uncertainty wear on everyone. “People say; ‘Don’t get attached,'” Cei explains. “That’s impossible. You take care of these kids for months, day in and day out. When they’re really sick, you cry with the families.” Maria Wagner, a nursing team leader, says knowing what can go wrong is the toughest: “When I have babies born in my family, I’m a mess for the whole nine months, until they come out healthy.”

Wagner and her team are the Navy SEALS of nursing, performing their duties under constant pressure and in front of overwrought parents, who are encouraged to visit at any hour. Many, like Laurie and Jason, come almost daily, to sit for hours. Nothing separates the six to eight babies in each section of the unit, except for temporary screens brought in for a modest breast-feeding mother or a dying baby. These nurses are always onstage, often called on to manage parents’ anxieties on top of patients’ needs. Caring for Jason is particularly exacting — his I.V. lines are threaded into veins the width of a hair — and because he is so intolerant of light and sound and touch, the pressure to work quickly, through the Isolette’s portholes, is relentless.

The team encourages Laurie and Jason to assist in their baby’s development. They can talk to him, touch him and, when he’s stable enough after six weeks, hold him against their chests, skin to skin — a practice called kangarooing that originated in Colombia, where incubators were in short supply.

The kangarooing helps, but only to a degree. “I don’t want to make it sound like it isn’t enough,” Laurie says, “but it isn’t enough. We still feel trapped. We have to get the doctor’s permission to hold him. I know that it bothers Jason that he can’t pick up his baby whenever he wants.”

What they can do is stand by the Isolette, watching nurses adjust their baby’s nasogastric tube or flip him every 12 hours so that his lungs drain and he doesn’t get stiff. Sometimes the Waldmanns change his diaper, a tiny affair patterned with ducklings and bunnies, although Jason is reluctant to do even that at first, intimidated by the I.V. lines.
“He’s just so small and fragile,” Jason says.

“We want to see meat on him,” Wagner says one day; during an impromptu consultation with the couple in the cramped equipment storage closet where Laurie puts a bottle of breast milk into a freezer, preparing for the day her baby will be able to digest it.

Wagner reminds the couple that there will be many ups and downs before Jason gets well. She also tries to give them markers to look forward to. “You have to start thinking about little things that are positive for you, like getting him back on his feedings. It’s a little goal, but it’s important.”

“I know he’s in a good place, and he’s in God’s hands,” says Laurie. “But I worry:”

Sometimes a premature birth can be directly linked to actions the mother had some control over — substance abuse, for example. But even with good prenatal care and no warning signs, as in Laurie’s case, the anguish can be immense. Laurie is diagnosed with postpartum depression after the first month. She cries at the smallest things.

“Did you ever feel so trapped,” she asks, “that you wanted to pull your hair out?”

Laurie has been having trouble producing breast milk for the baby; some days, she is unable to manage even half the recommended eight pumping sessions. She spends too long cleaning out bottles, terrified of leaving bacteria behind. One afternoon, lactation consultant Rachelle Lessen follows Laurie into the breast-pump room. “Pretend the baby is at home and you’ve got to feed him every two hours,” Lessen advises.

“It’s hard,” Laurie says. “It’s hard pretending.”

It’s also hard to pump much milk. The supply naturally dwindles if there’s no breastfeeding to stimulate production. Lessen makes suggestions: Keep an insulated cooler by the bed for middle-of-the- night pumpings; work it into the morning routine, just like brushing teeth. As Lessen leaves, she promises to call everyday. Her job requires diplomacy: She needs to emphasize how important the breast milk is to the baby’s growth and fragile immune system, without adding to the pressure Laurie already faces.

“I feel like I’m not a good mom because I’m not keeping up with what I’m supposed to be doing,” Laurie says, once Lessen has left the room. “I’m not dumb to the fact that breast milk is the best thing for him. That’s why I chose to do it. But I didn’t know it was going to be this hard.”

The neonatal unit is its own world, a culture defined by the common goal of getting the babies home. Orbits intersect in the halls and at bedside: lactation consultants, respiratory therapists, developmental specialists, social workers, nurses, nurse-practitioners, custodians, doctors, fellows, residents, radiology technicians. People speak in soft voices against a background of hums and beeps and the sound of air pushing through hoses. Even the language is foreign, a horrifying vocabulary of conditions that might cripple or kill a preemie: bronchopulmonary dysplasia, periventricular leukomalacia, necrotizing enterocolitis.

Isolettes are decorated according to how much optimism parents can muster. For Jason, at first only a snapshot of his parents’ wedding is taped to a corner. Slowly, stuffed animals begin to perch around the incubator, then signs. One reads: “Please do not open Isolette to touch or talk to me, only my daddy and mommy. Thank you, Jason Michael Jr. P.S. I will be home soon because Jesus is with me.”

Many of Jason’s problems have to do with his lungs. The immaturity of his organs makes him susceptible to life-threatening tissue leaks and breakdowns, but so far ultrasounds of his brain show only low-grade hemorrhages, not the kind that cause significant damage. Infection is also a threat; plastic I.V. lines and tubes attract bacteria, increasing the baby’s exposure. Hand-washing, low-tech as it may be, can save lives.

Jason hits a rough spot after two weeks. He can’t breathe without a ventilator — of course, at this stage of his life, he shouldn’t be breathing air at all — but the one he has been on isn’t helping. The rhythm and force of the transmitted oxygen aren’t sufficiently encouraging the exchange of gases in and out of his bloodstream. So his medical team puts him on a three-day course of steroids to reduce lung inflammation and switches him to a high-frequency oscillator, a machine designed to work at a more rapid rate but cause less damage to his delicate lung tissue. For the next two weeks, the oscillator — which delivers a minimum of 360 breaths per minute, 12 times faster than the previous ventilator — makes Jason’s chest flutter up and down in endless shiverings. He’s sedated with morphine to counter the body’s natural inclination to fight the machine, so that all his energy can be directed toward growth.

One wall of Dr. Seri’s office is papered with diplomas and certificates, some in Seri’s native Hungarian. On the opposite wall, news clippings of his tennis-playing younger son, Adam, crowd each other for space. One shows Adam playing at the U.S. Open. “Who am I to judge other people’s quality of life?” Seri says. “For one person, life may not be worth living if you cannot make it to the U.S. Open. Some parents say, “As long as the baby recognizes us.’ It could be not moving, not eating.”

He jumps from his chair to grab a pile of photographs off a shelf. They are pictures of statistics-defying children, some of whom he had written off medically as having no chance at all. Despite their happy outcomes, Seri refuses to be overly optimistic. And every time he talks to the Waldmanns, he reminds them that they have a very sick baby on their hands.

Why be so cautious? “Better to be a dumb doctor in the end,” he says, “than to give false hope. I must not betray my patients’ parents. If I raise hope beyond the level that could be verified with fact, I’d betray them. However, you must be sure hope exists.”

For reasons no one can identify, hope and life chances are distributed among preemies according to gender and race. Defying social hierarchies that come later, black girls are most likely to survive. They’re followed by white girls and black boys — then, at the end of the list, white boys like Jason.

Jason is doing better than most. At 11 weeks, his weight has nearly tripled, to more than 3.3 pounds. His blood pressure has stabilized; the oscillator, along with a second course of steroids, has helped; and his ventilator settings have been lowered, Even Seri has upped the baby’s chances of survival to about 90 percent.

Barring complications, Jason is likely to go home when most preemies do — around his original due date. For the Waldmanns, the day of discharge won’t put an end to their worries or costs: Some neurological problems don’t show up until school age, and over the next three years, Jason’s medical bills are likely to be much higher than a full-term baby’s. But that day will be priceless because it will be the start, Laurie says, of the life they had hoped for all along, “being normal parents.”