Michael Sierra – 4 weeks old, 2 1/2 pounds and swollen like an overstuffed sausage – needed attention. And he was getting it.
A defect was making his heart work overtime. Infection flowed through his blood, and a hole in his gut was spilling poison into his body.
He had survived a flight from the Rapid City, S.D., hospital where he was born to Presbyterian/St. Luke’s Medical Center. Now, he desperately needed surgery, but his doctors feared he was too sick to make one more trip, even from the neonatal intensive-care unit to an operating room a floor below.
So the operating room came to him.
Gowned nurses and orderlies converged on him. They came wheeling instrument carts, dragging monitors, and carrying masks and gloves. The unit’s nurses gently shooed out other babies’ parents as two pediatric surgeons arrived. Michael’s neonatologist, Dr. Jeffrey Hanson, summed up the situation: “He’s got the title of sickest baby in here today.”
A few years ago, few babies as small and sick as Michael would have made it this far. But advances in care are saving tinier and younger babies – even as the rate of premature birth continues a steady climb. The number of babies born at fewer than 37 weeks of gestation began rising in the 1980s and reached 12.4 percent of all births in 2005 – a 30 percent jump since 1983 – according to the National Center for Health Statistics.
While several factors can help predict the risk of preterm birth, there is no known cause for half the cases.
“We don’t know what causes it, and we don’t know how to treat it,” said Dr. Jalen Allen-Davis, assistant medical director for Kaiser Permanente in Colorado.
In 2003, half a million babies were born early in the United States, with hospital costs topping $18 billion, according to the March of Dimes.
In 2004, 10,000 premature babies died before their 1st birthday.
The tiniest survivors, and their parents, face uncertain futures that could be clouded by complications ranging from cerebral palsy to minor learning disabilities – or could be free of any problems at all. And while a few babies develop conditions that clearly will affect them throughout their lives, doctors struggle to predict with certainty which baby will be which.
Focusing on babies’ lives
When he walked into the NICU the July morning Michael Sierra arrived, Hanson wasn’t thinking about cost or why so many babies wind up in his unit.
He focused on keeping alive 46 of the sickest, smallest preemies a four-state area produced.
Along with The Children’s Hospital and the University of Colorado Hospital, Presbyterian/St. Luke’s cares for fragile babies from throughout the region.
Neonatologists such as Hanson work with high-risk-pregnancy obstetricians to try to stop premature labor and delay birth as long as possible.
“Every additional day inside Mom saves us two to three days in the NICU,” Hanson said.
That benefits not just the baby. “Every day in the NICU costs $2,000 to $3,000,” he said, and that doesn’t include nursing care, medication, surgical procedures or machinery.
Most of the babies inhabiting isolettes that July morning had been born too soon or too small. Some just needed time for their lungs to adjust to breathing outside the womb.
But for others, early arrival was just the beginning of their problems.
In one of the unit’s four private rooms was a little girl who weighed 1 pound, 7 ounces at birth. In the five weeks since, she had survived a hemorrhage in her brain, but she still relied on a machine to make her breathe, occasionally slipping into frighteningly slow heart rates.
Her parents, Hanson said, had tried for 10 years to have a baby. Despite the girl’s numerous scary episodes, Hanson had become convinced she would pull through. “I told her mother, ‘I don’t know if I’ve done you any favors.”‘
In the next room, Glenda Schellenberger sat holding her son Adam, who has Down syndrome and needs surgery to fix an opening in his heart.
Adam was born June 27 – nearly three months early – in Wyoming, and doctors there immediately flew him to Denver.
Since then, Schellenberger has hardly left his side, while her husband has spent much of the time home with Adam’s six siblings. Her hope, Schellenberger said, is that her youngest child would be home in time for her oldest child’s August wedding.
Factors behind preemies
Ask most obstetricians and neonatologists what’s driving up the rate of premature births, and the answers are consistent: more older moms, fertility treatments and infections.
And, they say, the single biggest indicator for having a premature baby is having already had one.
Still, high-risk-pregnancy obstetrician Dr. Richard Porreco said “fully half of premature births occur in people with a clean risk assessment.”
More women over the age of 35-40 are having babies, but age alone doesn’t cause early labor, Porreco said.
“Older women tend to deliver earlier because they tend to be less healthy overall – they have more high blood pressure, more diabetes, more obesity,” he said.
Doctors, the March of Dimes and child advocates all link healthy babies to quality prenatal care. But when pressed, all acknowledge that even top-notch medical care won’t guarantee a full-term delivery.
Hanson was checking on Michael when his mom and dad walked into the NICU that July morning, exhausted after the drive from Rapid City.
Hanson introduced himself to Tweedy Sierra and Dale Willcuts and said, “He’s pretty sick. He’s going to have two operations, and we’re going to do them right here.”
Sierra and Willcuts looked at their baby and then back at Hanson. “I’ve seen babies as sick if not sicker survive. So don’t give up hope,” Hanson said, even as he was careful not to offer hope in excess.
They nodded and looked around the room, their eyes coming to rest on the mass of tubes swathed in a too-big diaper that was their son.
If Michael survives, Hanson told them, he may be here for months.
As hospital chaplain Nora Smith led Michael’s parents out of the room, nurses gingerly turned the baby on his right side and taped his body to the pad – not quite as big as a placemat – that was his mattress.
The first of Michael’s procedures that afternoon would close a duct in his heart. Another would insert a long-term feeding tube, and one would remove damaged bowel.
Preterm babies aren’t good at regulating their blood flow and blood pressure, said neonatologist Dr. Delphine Eichorst. The resulting peaks and valleys in blood flow can cause bleeding on the brain and are also associated with the condition Michael had: dead tissue in the bowel.
“Our hope is that he’s got enough bowel to live,” said his nurse, Lin Litke. “If not, then they just close him up. Then it becomes hospice.”
As a roomful of nurses looked on, and the monitors of three other babies in the room beeped, Dr. Steve Rothenberg made a careful incision, pulled apart Michael’s rigid, swollen gut, and put a hand inside. “It’s not looking good,” he said.
Healthy bowel is rosy pink. What Rothenberg held in his hands, what he pulled out of Michael, was dusky gray – dead, useless organ. Everyone in the room recognized that.
For minutes, the only sound in the NICU was the beeping of monitors, the hissing and puffing of breathing machines.
Hanson stomped off to a far corner, shook his head and stared at the floor.
Ultimately, Rothenberg clipped off half of Michael’s lower intestine and a nurse dropped the dead tissue into a silver bowl. Rothenberg then moved on to Michael’s colon, and seemed encouraged.
From across the room, Hanson tried to take inventory. “So the ascending colon is OK?”
Rothenberg began to nod, then spat out an obscenity.
More dead tissue. And it just kept coming. In the end, Michael lost half his colon as well.
It could be months, if not years, before Michael eats normally, Hanson said. That is if he manages to fight off infection and learns to breathe on his own. It will be a long, costly ride, he said.
But he was alive.
The surgery over, Rothenberg went to look for Michael’s parents. On the way, he stopped in Adam’s room, introduced himself to Glenda Schellenberger and described the surgery he would perform the next day to fix Adam’s heart.
“We do this operation on a lot tinier babies,” he told Schellenberger. Adam, at 1 month, was just shy of 4 pounds.
Little clip “amazing”
Before birth, an open channel between vessels leaving the heart – called the ductus arteriosus – allows blood to bypass the lungs, which aren’t being used, in order to reach the rest of the body. After birth, the channel closes.
But in premature babies, it often doesn’t close.
That can cause excess fluid in the lungs and strain the heart. Sometimes medication closes it. If it doesn’t, surgeons must insert a small clip to shut the passageway. Until six years ago, there were no preemie-sized clips, so surgeons had to jury-rig parts made for bigger people, Rothenberg said.
“The engineering feat to create that little clip was amazing,” he said. “It really changed my ability to do this surgery.”
There hasn’t been a true “miracle drug” to come along in neonatal care since the 1980s, when researchers produced a synthetic version of a surfactant protein vital to lung function and often lacking in premature babies.
Eichorst helped give the first dose of the drug in Denver. It was midnight, July 8, 1987, she said.
It was a pivotal moment, but that isn’t why the date sticks in her mind. “I remember because four hours later, I went into labor,” she said.
Research investment
In 2003, the March of Dimes made preventing premature births the focal point of its considerable fundraising and marketing efforts.
That means in addition to the $30 million the nonprofit invests annually in research, another $3 million will be earmarked for research into causes of premature birth and ways to prevent it, said Dr. Michael Katz, the advocacy group’s vice president for research.
Among the new recipients is a team at the University of Colorado Health Sciences Center that will get more than $350,000 over three years.
Last month, James McManaman started enrolling women in a study targeting the role infections play in causing preterm births. He hopes the work will eventually lead to a test that can predict who might give birth prematurely.
“We’ve been using drugs to stop preterm labor for 30 years and, despite that, the preterm birth rate has gone up,” said Dr. Ronald Gibbs, chairman of CU’s ob-gyn department.
Gibbs hopes that more advance warning of who is most at risk could make those treatments more effective.
In addition, the March of Dimes is investing substantial funds to examine the role of genetics in causing premature births.
A number of those studies explore why African-American women are nearly twice as likely to deliver babies prematurely as white women – and why, for American Indian women, the rates of premature births are nearly as high.
“We know that health care disparities are a factor,” said Kaiser’s Allen-Davis. “But when you control for insurance status and socioeconomic status, some of these disparities still exist.”
And even among mothers living in Africa, preterm birth is a problem that affects women regardless of economic status, said the March of Dimes’ Katz.
“It went well”
After he left Schellenberger’s room, Rothenberg found Michael’s parents resting in an unused patient room.
“It went well,” he told them.
The couple looked up at him, bleary-eyed.
“Thank you,” Sierra said.
“He’s very sick,” Rothenberg said. “But he can survive and live if everything stays OK.”
Minutes later, the couple was back in the NICU, standing over their son.
Nurses were adjusting Michael’s tubes and wires, repositioning him in his little bed. A syringe had come to rest between his thumb and forefinger, as though he were trying to grasp it in fingers little bigger than grains of rice, and nearly translucent.
A nurse tried to hand Michael to his father – who backed away.
“Hold him, Dad, you won’t break him,” she said.
Willcuts, who at 6 feet, 2 inches says he’s the runt of his family, seemed to stop breathing as the nurse laid Michael in his enormous hands.
The last time he held his son, he explained, he had tipped him just a degree this way or that, maybe squeezed something just wrong, and upset the precarious balance of oxygen flow and breathing machines. Alarms had gone off, nurses had come running.
Willcuts hadn’t held his son since, until now.
Staff writer Karen Augé can be reached at 303-954-1733 or kauge@denverpost.com.
