Love's Labors Lost
First, you notice the babies. Some so tiny, each fits into the palm of a doctor's hand and weighs no more than a few apples. Their skin is paper-thin. Their limbs are spindly twigs. Then you notice something else about the Neonatal Intensive Care Unit (NICU) at Beth Israel Deaconess Medical Center: Twins and triplets are everywhere. Multiples can sometimes account for more than half of the unit's babies. Doctors and nurses call one area of this hospital unit “Twin Alley.”
In the last two decades, the rate of triplets and higher-order multiple births has rocketed a staggering 400 percent, leading to a dramatic upsurge in the number of premature babies. It's the result of a booming fertility industry, aided by women who wait longer to give birth — particularly in this state. In 1996, Massachusetts became the first state in which more babies were born to women 30 and older than to women under 30, and the trend has only escalated since. “We were narrowing the problems of prematurity in Massachusetts,” says Dr. DeWayne Pursley, head of Beth Israel's NICU. “Then assisted reproductive technology came around.” While a normal pregnancy lasts 37 to 42 weeks, twins are born on average at 35 weeks, triplets at 33 weeks, and quadruplets at 30 weeks. Most of these babies will be healthy. But as fertility clinics spin out more multiples, many of those twins, triplets, and quadruplets will be born extremely premature — at 28 weeks or less — when infants are most vulnerable to lung problems, brain hemorrhages, learning disabilities, and cerebral palsy.
“Couples see twins as two for the price of one,” says Dr. Richard Reindollar, a reproductive endocrinologist at the fertility clinic Boston IVF. “It's true the majority will do fine. Still, I know about 6 percent of twins die in the second trimester.” Another 6 percent will spend three to five days in the NICU. And 12 percent will be in the unit for a few weeks or more, sometimes living in incubators that serve as high-tech wombs. Connected to monitors and ventilators that beep and buzz and ring, the incubators keep babies alive, Reindollar says, until they can survive in the outside world.
“Twins,” he says, “are not a success.”
Nicki Azoff and her husband, Peter, had wanted a baby since they married in 1992. Even their jobs were child-oriented: Peter was a school furniture sales rep; Nicki, a pediatric occupational therapist. Doctors couldn't explain the Natick couple's infertility, so over two years they did four in vitro fertilization (IVF) procedures. Morning and night, Nicki injected her thighs with fertility hormones. She had ultrasounds and blood tests every few days. Then, during each IVF procedure, doctors anesthetized her and pierced her ovarian follicles with a needle to retrieve the eggs. In the lab, the eggs were fertilized with Peter's sperm and, a few days later, the resulting embryos were transferred to Nicki's uterus.
But after three rounds of IVF, Nicki was 32, still not pregnant, and increasingly desperate. On her fourth try, none of the embryos looked particularly healthy, so Nicki, Peter, and their doctor agreed to transfer five embryos into Nicki's uterus instead of three or four.
For all her infertility heartaches, Nicki was fortunate in one way: She lived in Massachusetts, probably the most infertile-friendly state in the country. The largest fertility center in the United States is Boston IVF, which has three clinics in Greater Boston and performs an extraordinary 3,000 IVF procedures each year at a typical cost of about $10,000 per round. The state also ranks third overall for most fertility procedures performed, behind only California and New York. And when it comes to insurance coverage, it doesn't get much better than Massachusetts, which is one of only four states that mandates comprehensive coverage for IVF.
Such benefits were nonexistent a generation ago when most babies were born to women in their twenties — the peak of fertility. But by 1996 that trend had changed in Massachusetts, probably because of the number of highly educated, career-focused women here who delay childbearing until their jobs and their personal lives are settled.
Older motherhood undoubtedly has plenty of advantages. Women over 30 are less likely to smoke. They tend to be more financially stable and emotionally mature than their younger counterparts. But there are two potential downsides to waiting: Infertility. And premature babies.
During an ultrasound following Nicki's fourth IVF, her doctor beamed. There are three heartbeats, he announced. Triplets. Lying on the examining table, Nicki looked at Peter with worry. They had longed for a baby for years. But they'd never imagined three. The expenses — and the stress — would be enormous. Mostly, though, Peter questioned whether Nicki, just 5 feet tall and thin, could carry three babies to term. “Both of our hearts just sank,” Nicki says.
Women faced with carrying triplets and quadruplets often undergo a procedure called multifetal reduction — the termination of one or more embryos or fetuses during the first trimester to improve the odds that the others will be born healthy. “The parents have heard the statistics about multiples resulting from fertility treatments,” says Dr. Linda Heffner, head of maternal-fetal medicine at Brigham and Women's Hospital. “But they never expected they were going to have triplets. And no one's talked to them about the implications.” Of the 100 or so patients who consult with Heffner and her partner annually, about half choose to reduce their pregnancies to twins.
Like many women in her situation, Nicki couldn't bear the thought of fetal reduction. By the eighth week of her pregnancy, she didn't have to. During a followup ultrasound, she learned one of the embryos had died. Nicki wasn't sure how to feel: After years of trying to get pregnant, she'd lost an embryo. But she knew the others would have a better shot now. In the coming months, she would learn that the twins were boys. And as her belly grew, Nicki relished the thought of being their mother.
When Beth Israel's NICU opened 10 years ago, the staff underestimated the number of babies they would see each month. “We were counting expectant mothers,” says Dr. Pursley, “when we should have been counting fetuses.” As nurses wheeled more incubators with twins and triplets into the unit, some doctors grew increasingly alarmed. Among them was Dr. Douglas K. Richardson, one of the unit's seven highly respected neonatologists. (He was interviewed by Boston magazine in July, a month before he died in a bicycling accident.) “There's no interaction between fertility clinics and NICUs,” Richardson complained. “From the perspective of most fertility doctors, it's irrelevant if one out of six mothers ends up with babies in the NICU. Their thinking is: Women want to be pregnant, and we get them pregnant. The idea that these pregnancies run up huge NICU bills and cause untold suffering doesn't seem relevant to them.”
The problem stems in part from the competitive nature of the fertility industry. Clinics advertise their success rates, and women flock to the ones that boast the best odds. “And how do you guarantee the highest rates of success?” Richardson said. “Implant more embryos.”
Doctors, bioethicists, and fertility organizations have been debating whether federal regulations are needed to restrict the number of embryos doctors can transfer during in vitro procedures. Laws in Sweden, England, and some other countries generally restrict doctors from implanting more than one or two embryos. Few expect such regulations in the United States. Three years ago, the American Society for Reproductive Medicine, the nation's largest organization of fertility doctors, issued guidelines — which are completely voluntary — suggesting doctors implant no more than three embryos in any woman under 35. And even as improved lab techniques offer better ways for doctors to select the best (and fewest) embryos to implant, the multiple rate remains startlingly high. While only 1.2 percent of natural pregnancies result in twins, the overall likelihood that women under 35 pregnant through IVF will deliver multiples is an incredible 40 percent nationwide — and only slightly lower in Massachusetts.
The IVF multiple rates at most Boston clinics are 30 to 35 percent. And as long as fertility doctors are rewarded for their high pregnancy rates and women are willing to gamble on multiples, many doctors don't expect those numbers to substantially decrease soon. “Women have gone through so much and invested so much that they'll take risks,” said Richardson. “The women want it, and the doctors don't want to deny it.”
One morning during a staff meeting at work, Nicki felt waves of sharp pain in her back. By 11 p.m., she was admitted to Beth Israel's Labor and Delivery Unit. Her water had broken; the contractions, which Nicki would later learn may have been brought on by an infection in her uterus, were three minutes apart. She was barely six months pregnant.
Nicki knew that even an additional day in the womb could mean the difference between her babies living and dying. “I am not having these babies now,” she told her obstetrician, with Peter by her side. But doctors had no way to stop Nicki's premature labor without putting the fetuses at risk. Four hours later, the babies were on their way.
Max came out first. Then Seth was born, his thin skin badly bruised by the trauma of the delivery. Max weighed 1 pound, 9 ounces, and Seth, 3 ounces less. Neither was longer than 12 inches. Their purple, wrinkled skin hung from their scrawny limbs like an old man's. Their eyes were fused shut. They looked more like fetuses than newborns. Under heat lamps, two teams of NICU doctors, nurses, and respiratory therapists worked at a furious pace, assessing each baby for breathing and heart rates. Seth and Max weren't crying or screaming, declaring themselves alive the way full-term babies do. They were barely breathing. Nicki prayed for at least one to live.
In minutes, doctors threaded spaghetti-like breathing tubes into the babies' throats and whisked them down the hall in incubators. Seth and Max were gone before Nicki or Peter had been able to hold or even touch them.
Left in the delivery room with Peter and a nurse, Nicki started crying. “I want a room anywhere but the maternity wing,” she told the nurse. Believing that the babies she'd tried to conceive for more than two years were about to die, she didn't want to spend her recovery watching healthy, plump newborns head home with their glowing parents.
Twenty-five years ago, Max and Seth would have had little chance of surviving. But in recent decades, neonatology's leaps have been among the most impressive in medicine. With the invention of mechanical ventilators in the late 1960s, babies that had been in the womb for only 34 weeks were routinely saved. In the next two decades, improved intravenous nutrition and more sophisticated ventilators rescued babies as young as 26 weeks. And by the late 1980s, almost 100 percent of 34-weekers and 90 percent of babies born after pregnancies of 27 to 31 weeks were surviving. More recently, synthetic surfactant, the substance that helps babies' lungs from collapsing, has helped push survival rates for 24-weekers like Max and Seth from 10 percent to 50 percent.
But for all its high-tech gadgetry, neonatology remains a game of chance. With the smallest babies, doctors make educated guesses about their long-term outcomes. “We do our best to make the right decisions,” Beth Israel's Dr. DeWayne Pursley says. “But in one of out of four scenarios, you don't know what's going to happen.”
Within minutes of the babies' arrival in the NICU, all the technology and know-how of the past decades came together to try to save them. Doctors and nurses hooked up Max and Seth to ventilators and attached a mass of wires to their feet, chests, and stomachs. The babies were fed through intravenous lines in their belly buttons. Overhead, monitors flashed their heart rates and blood pressure. Still, Seth's lungs were so underdeveloped that even the most gentle ventilator setting was too harsh: The air pressure that helped inflate Seth's lungs also blew holes in his lungs.
Seth, the smaller of the babies, had been alive for 10 hours when the NICU staff called Nicki and Peter to his bedside. Though they had expected bad news, the couple held out hope. But neonatologist Dr. Jim Gray explained that Seth's lungs were irreparably damaged. He then gently offered Nicki and Peter a choice: Seth could die while hooked up to the ventilator, or he could die in his parents' arms. If only for a short while, Nicki and Peter wanted to parent their infant without the wires and machines.
As the respiratory therapist shut off the ventilator, Gray pulled the tube out of Seth's trachea. Then, one of the nurses wrapped Seth in a blanket and brought him to a small room in the NICU usually used for mothers to pump breast milk for their newborns. Still dressed in her hospital gown, Nicki was holding Seth in her arms when he died 20 minutes later.
Shortly after Seth's death, a nurse gave Nicki and Peter a small silk box from the NICU social workers and the rest of the staff. Inside were photos of Seth, his baby cap, a poem, a note from the staff, and a lock of Seth's hair — the mementos of his brief life.
What had begun as a triplet pregnancy was now reduced to one baby with a precarious hold on life. In his first week of life, Max had a 40 percent chance of dying from ripped lung sacs, infections, or other complications. During morning rounds the day after Seth's death, Richardson looked at Max in his incubator. “The parents' hopes are in one remaining fragile basket,” he said. But Nicki and Peter clung to the flip side of the statistics: If Max could make it through those first weeks, he would have a 50 percent chance of growing up as a kid with no greater handicap than a pair of glasses or a slow finish in school relay races.
“I'm sorry, handsome,” murmured nurse Linda Mahoney, turning Max on his side and rearranging the sheepskin he slept on. “I know you hate this.” Max twisted his face and trembled at Mahoney's touch. Even opening the incubator porthole — which Mahoney did several times a day to change Max's doll-sized diapers, check his temperature, and occasionally prick his heel for a blood test — caused his temperature to drop. After shutting the incubator, Mahoney turned to a computer to update Max's chart. A few moments later, his eyes still closed, Max stretched out his hand, like a blind man searching for a bearing. But there was nothing — no womb, no mother. Just air.
Sometimes Nicki allowed herself to think about how it was supposed to be. If the twins had held on, if they had made it to 38 or 40 weeks instead of 24, she would have spent her mornings in her three-bedroom suburban house. She'd wake up when her sons woke up. She'd breast-feed them and dress them in cotton rompers, socks, and caps. She'd put them in strollers and take them to the neighborhood park.
Instead, Nicki spent every day in an intensive care unit. Along with the many babies born a few weeks prematurely, there were a couple of preemies like Max born on the border of viability. As days turned into weeks, Max endured a roller coaster of progress and setbacks but slowly improved. Nicki and Peter had plenty of scares. Like the time Max had to undergo surgery to repair an artery in his heart. Another week, he got an infection and had to have a spinal tap. But over time, ounce by ounce, he gained weight. After several weeks, he graduated to a nasal breathing tube. “I almost cried the day he came off the ventilator,” says nurse Mahoney, who regularly checked on Max's progress, even if she was assigned to another baby. “No one expected him to get that far.” At two months, he was sucking on a pacifier and wearing baby clothes decorated with dancing bears. Finally he slept in a crib rather than an incubator.
It took 112 days before Max could be discharged. He weighed 6 pounds. It was still unclear whether or not he would develop learning disabilities or suffer delays in walking or talking. But he was ready to go home.
On their last trip to the NICU, Nicki and Peter brought a homecoming outfit for Max and a car seat, as if they were parents of a newborn, not a four-month-old. Peter videotaped the nurses and doctors, as well as the NICU that had been Max's home for so long. “Peter used to joke that he hoped our children would have my genes,” says Nicki, whose family members have all been exceedingly bright. “Of course, I think about this stuff and the problems Max may have. But we've wanted a baby for a long time. We love him to death. We're just so glad to have him and that he's alive.”
When Nicki looks back on her journey, she can't imagine doing it differently. Desperate to become a mother, she did what medical technology offered her. And the more times she underwent IVF, the bigger gambles she was willing to take. “I think everyone who does IVF should take a tour of the NICU first,” she says. “But we'd had so many failures. Do I regret what we did? No. But will I ever get over losing Seth? No.”
Not long ago, Nicki met someone who had a similar story — at least in its beginnings. The woman had endured in vitro and was pregnant with twins. Everyone was thrilled for her. Nicki felt something else. “I had a strange reaction,” she says. “I thought, I hope you make it.”