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STEPHEN NOHLGREN and BRADY DENNISMedical know-how can keep many of the most premature babies alive, but they and their parents face uncertain futures.
Cooing at her tiny daughter in the crib, Waldina Cole swells with love. Down the road, she and Elizabeth may struggle with toilet training, walking and ABC's. But for now, nothing matters except Elizabeth's next breath, the affirmation that she's getting stronger.
Elizabeth was born in August, 31/2 months premature. She weighed one pound, 10 ounces and was 10 inches long - shorter than a Barbie doll.
Her skin was so tender and stimulation was so disruptive that her mother couldn't touch her for three months. At one point, Cole stopped pumping and freezing her breast milk because she was sure her daughter would die and never get to drink it.
Elizabeth, now 5 months old and 8.8 pounds, lives in the neonatal intensive care unit at St. Petersburg's All Children's Hospital, surrounded by plugs, wires and monitors with squiggly lines. With luck and some heart surgery, she and her mother may go home by the end of the month.
"I prayed to God for a miracle," Cole said Friday, recalling Elizabeth's arrival. "She's going to be alive for a purpose. I don't know what it is yet, but maybe it's going to be good."
Cole's gratitude and hope are typical reactions when modern technology keeps extremely premature infants alive, said Dr. Jeane McCarthy, longtime All Children's neonatologist.
But as science extends out-of-womb development to smaller and smaller preemies, the long-term health of those children gets trickier and trickier, said McCarthy, and many parents have no concept of what lies ahead.
In a study released this week in the New England Journal of Medicine, four out of five extremely premature babies were plagued by developmental problems when they entered school. One-quarter had cerebral palsy, severe cognitive impairment or other serious disabilities.
The study tracked all extremely premature births in Britain and Ireland over a 10-month period in 1995. It covered infants born after 22 to 25 weeks of gestation, compared to 39 to 40 weeks for full-term babies. Some of the 25-weekers - like Elizabeth Cole - escaped major trouble. All but one of the 22-weekers and 23-weekers were left with severe, permanent disabilities.
Babies delivered that young must be kept alive by using a ventilator, which scars their still-developing lungs. Brain tissue critical to motor development is often missing. Sometimes a mother delivers early because of an infection or high blood pressure that has damaged the fetuses' brain in the womb.
"We can save babies, but once we get down to less than 25 weeks, we often have reached the limit of our ability to give them a chance for a normal existence," McCarthy said.
The worst cases will die before they leave the hospital - sometimes after hundreds of thousands of dollars of care. Others will go home but never see, hear, walk or live without total care. All Children's might encounter 50 to 60 such cases a year. Facing these prospects, about 10 parents a year will decide to shut off the ventilators, McCarthy estimated.
Most will gut it out, hoping against hope.
"Parents don't always hear what you tell them," McCarthy said. "You can show them the X-rays, but their baby doesn't look abnormal. They will say, "I don't understand why my baby is abnormal,' or they say, "God will make a miracle.' "
When Dr. Stanley Graven helped open one of the country's first neonatal intensive care units in the late '60s, doctors could save the lives of preemies born after 32 weeks of gestation, but not much earlier. Professionals have learned a lot since then.
Doctors and nurses now keep lights and sounds as low as possible in neonatal units, simulating the womb and allowing the brain to continue developing without disruptive stimulation. Pick up 24-weekers without warning and they may stop breathing while their brains adjust to the sudden physical change.
Synthetic nutrition fed through tiny tubes fattens preemies up when even breast milk could lodge in their delicate lungs and kill them. High-tech incubator beds control temperature and humidity and can spin them around like a lazy susan if multiple hands need to resuscitate them or perform emergency, on-site surgery.
Perhaps the biggest advance is a medicine called a surfactant, which coats the baby's lung sacs and keeps their tiny lungs from collapsing. But because lung sacs don't develop until about 28 weeks, babies that emerge earlier don't fare as well.
"The outcomes for babies 28 weeks and older is really exceedingly good," said Graven, a neonatologist at the University of South Florida.
They and older preemies probably will have subtle problems, such as walking at a later age or needing special glasses that keep their eyes from crossing. Often they struggle to filter out background noise. Even in high school, Graven said, they might converse normally one-on-one but be befuddled by background noise.
More serious problems occur in babies born before 28 weeks, though their prospects vary by their birth weight, their mothers' health and the reasons for premature delivery. An infection and high blood pressure in the mother, for example, are more dangerous than cervical conditions that cause premature delivery.
Though premature births in general have not increased substantially, Graven said, very early births and very low birth weights have. One likely cause is multiple births that often accompany fertility treatments.
The New England Journal study indicated that two-fifths of preemies born before 26 weeks had IQ's in the 70s, including all but one of the 22-weekers and 23-weekers, Graven said. In the fourth grade, they will probably read at a second-grade level. By high school, their reading and math skills will probably plateau at the seventh or eighth-grade level, he said.
Of the 241 children in the study, 49 had cerebral palsy, 15 couldn't walk, six were blind and seven were deaf.
"If you are going to have your child born under 25 weeks, you have to assume there is a huge risk," he said.
Elizabeth Cole, a 25-weeker who is now 5 months, needed surgery to repair a detached retina. She seems to recognize colors, follows her mother's face with her eyes and fixes on a plush animal mobile that plays lullabies at the end of her crib.
She had brain bleeding, a common problem for preemies, but X-rays of her brain look good, says her mother, Waldina Cole.
"I expect her to walk later than regular babies. When she goes to school, she won't be able to run as fast. As she grows, I'll just have to see how she develops."
Cole, 34, lives in New Orleans with her husband, John, and three stepchildren. She couldn't conceive for 10 years until Elizabeth came along. The couple were vacationing in Fort Myers when labor started and her water broke and brought Elizabeth along with it. When Fort Myers doctors discovered an operable heart condition, they airlifted mom and daughter to All Children's.
Cole has lived at the Ronald McDonald House for four months, visiting Elizabeth every minute she can. They let her hold her daughter now and whisper to her in English and the Spanish of Cole's native Honduras.
"God brought me to this hospital. In New Orleans, they don't have a hospital like this," Cole said. "I feel safe here."
She is trying to persuade John to move the whole family here, so that Elizabeth never has to stray far.
Across the bay at Tampa General Hospital, beeping monitors, hissing respirators and minuscule babies surrounded by Plexiglas have become daily surroundings for Venus Rook and Steve Bishop.
Their son, Phoenix, was delivered by an emergency C-section on Dec. 27, more than 3 months premature. He weighed 1 pound, 11 ounces, and has lost weight since then.
He has suffered bleeding on his brain and an infection. He takes antibiotics and blood pressure medicine. A respirator helps him breath.
They wonder "how much his little body can take," his mother said Friday.
His hands are barely the size of an adult fingernail. His head is smaller than a tennis ball. His skin is thin and translucent.
Doctors warn that even if Phoenix pulls through, other struggles might lie ahead, including the risk of cerebral palsy and mental disabilities.
"You do worry about that," said Rook, 29. "You always wonder, "How severe a disability is he going to have?' You want your kid to be normal."
At night, back home in the Hernando County town of Spring Hill, they've had long talks about how they might deal with any disability. They've read books and surfed the Internet for information. Still, they arrive at the hospital each day, thankful their tiny boy with the big feet has made it through another night.
"Then," Bishop, 37, said, "we move on to the next hurdle."
As he talks, Rook slips her hand through the plastic enclosure and, with one finger, strokes her son's head.