Allison's Story

Feb. 13, 2006 — -- In small plastic incubators, human life -- born unready -- struggles to thrive.

These premature babies may be tiny, but they are entirely recognizable -- with tiny hands and toes, tiny little yawns, tiny little eyes that open and look around.

But for these babies, their hold on life is fragile, because they are still so unready.

They're alive only because science battled back against nature, which is the daily struggle of the doctors and nurses who work in the neonatal intensive care unit at Morgan Stanley Children's Hospital of New York-Presbyterian in New York.

For 10 days last month, the "Nightline" team visited the hospital and documented families' experiences and the doctors' efforts to save their babies' lives as they explored the ethical questions raised and the decisions made.

One of those tiny babies is Allison Lucca Susana, born weighing just under 2 pounds and now just a few weeks old.

Her story has been one of ups and downs, for both her and her parents.

The Struggle to Live

Allison's mother, Miriam, is 25 years old and has diabetes and other health problems. Doctors had told Miriam and her husband, Pedro, that she might not ever be able to become pregnant.

She beat the odds, although it hasn't been easy. At six months along, Miriam's body began fighting the pregnancy -- her blood pressure shot up so high it threatened her and the baby.

So Allison was delivered in an emergency Caesarean section and was taken straight to the neonatal intensive care unit, which got oxygen moving into her still underdeveloped lungs, food into her body and kept her warm, creating, in a sense, an artificial womb.

"When you're pregnant you read all the books, what to expect when you're expecting," Miriam said. "Nobody ever told me about premature babies and all the things they go through. So much is going on, you have no idea."

And in the early days of Allison's stay here, Miriam had no idea that her daughter still had a life-or-death struggle in front of her. But then, who ever thinks of newborns in life and death terms except for the nurses and doctors who deal with that every day?

All in a Day's Work

Dr. Richard Polin is one of those doctors. He's been taking care of these fragile babies since 1975, when intensive care for infants was still relatively new. Parents were kept away except during strict visiting hours. And given that a normal pregnancy lasts 40 weeks, it was inconceivable back then that they could routinely save babies born earlier than 30 weeks.

Now there's Allison at 27 weeks. And others born even earlier.

"For now, I think the limits of prematurity, whether you call it 23 weeks or 24 ... have been reached," said Polin, who heads the unit.

The challenge now, Polin said, is safely "growing" the babies, who have been born with hearts, lungs, and digestive and nervous systems that are months away from being ready.

But if there is a lifesaving procedure or a new technology that can be applied to the infant, it will be found here at the Morgan Stanley Children's Hospital.

The unit was designed to provide as much serenity as you can have in a neonatal ICU, and that's been another important change over the years. Families are not only allowed in, they're encouraged to visit any time of the day or night.

Soothing music is provided for the babies, and soft lighting and private space for the parents. It's all meant to ease the sense of crisis.

The Exhaustion Never Ends

Still, it's not easy to see a baby start life this way. Miriam has to hold Allison hooked up to the lifesaving machines. In spite of this, Pedro and Miriam try to make the best of it.

"You laugh one minute and you even make jokes and the next minute the reality is that our baby is in the hospital," Miriam said. "We can't hold her. We can't kiss her. As bad as we wanted her, now we have to wait a little longer."

Added to that is the chronic sense of exhaustion, the parents both said.

"I don't think we stop being tired," Pedro said.

"There's not a level to describe how tired we are," Miriam agreed.

And maybe that's what finally hit Miriam on a late afternoon a few weeks ago. Or maybe it was the relief that Allison was alive and being taken care of. But finally it was too much -- and she broke down in tears.

But what she and her husband didn't and couldn't know was that things were about to get much worse.

A Turn for the Worse

After a fairly easy start to life, Allison's family came to her incubator one morning and found her gray and not moving.

"She wouldn't open her eyes at all," Pedro said. "And her belly was really red."

A day later and her condition had grown much worse -- she had a raging infection. Two floors away,l a surgeon named Mark Arkovitz was preparing to operate.

"She was getting pretty sick, which is why we decided to go to the operating room," Arkovitz said. "In this baby, the intestine practically died, and the stool and the feces was just laying there in the baby and was producing a profound infection and that was killing her."

Although she weighed less than 2 pounds, Allison still needed a breathing tube down her throat for the surgery, but because she was so tiny, that part of the procedure alone took more than an hour to accomplish.

'Was It Something That I Did?'

Outside her daughter's operating room, Miriam admits how guilty she feels.

"You think ... was it something that I did to make her be born early? And in reality there is nothing that you did. It was her time to come now," she said.

While her mother grappled with her daughter's precarious health, inside the operating room, doctors discovered that inside Allison's abdomen, which is smaller than a peach, more than half of her intestines had died. They weren't getting enough blood flow because her tiny half-grown heart couldn't push blood to them effectively. And she needs those intestines functioning to gain weight.

"If all of it had died I don't think she would have gotten off the table," Arkovitz said. And without the surgery, she probably would have died within hours.

Arkovitz tried, delicately, to convey to the parents just how sick Allison was.

"He kept saying she's very sick. That was the one thing that he repeated over and over," Miriam said. "He was so serious that it scared us."

"He said she lost a lot of blood but she's alive. She's still sick," Pedro said.

'Don't Lose Hope'

But Allison's situation is indeed serious. The infection has passed, but what are her chances with half an intestine? The doctors don't know. And that's the truth of neonatal intensive care: The doctors bring your baby back from the brink of death -- twice in Allison's case -- but they can't predict with certainty how any baby will turn out.

"You think, 'OK, I have a premature baby, she'll be in an incubator until April -- my due date -- and I will take her home and she will be fine.' No, they're tiny. Their immune systems are not developed yet," Miriam said. "It's a horrible feeling to feel helpless when you're used to taking control of your situation. In reality they should have still been inside of you, hearing your voice, hearing your husband's voice, hearing your family's voice.

"Feeling your warmth and although they're inside of an incubator, it's not the womb," she said.

"They need to know that you're there. That you love them."