Zachary and Maia

Feb. 15, 2006 — -- Leaving the hospital recently, Kristen and Larry Kahn seemed happy as they pushed a doubles stroller that carried their twin sons, Zachary and Jason.

The Kahns may look like any other proud new parents, but what they've been through in the past year is more than most parents can imagine.

For 10 days in January and February, the "Nightline" team spent 24 hours a day inside the neonatal intensive care unit -- the NICU -- at Morgan Stanley Children's Hospital of New York-Presbyterian in New York. "Nightline" documented the emotional trauma of families whose smallest members hover between life and death in their first weeks of life, and the decisions doctors and nurses must make every day in an effort to save them.

The Kahns, who conceived through a fertility treatment, have been through the NICU experience twice. About a year ago, Kristen delivered her baby boy, Jacob, prematurely. He died five days later.

"He was just barely a pound," said Larry.

A Way to Remember

To help parents cope with the death of a baby, the nursing staff fills a satin-lined "memory box" with mementos of the baby; the box might include the child's handprints and footprints, birth certificate, clothes and photos.

"In high school, you would get the essay question all the time of, if your house was burning and you could rescue only one thing from your house ..." Larry said. "I think this would probably be it for me."

Wendy Cambrea, a NICU nurse, knows the importance of these memory boxes.

"A lot of times the parents don't want them right away. We save them here for them, and a lot of times, a year or so later, they'll want them because they have nothing, nothing else to remember the baby by," she said.

Cambrea speaks from experience -- she has been there herself.

"My first baby was premature, and he only lived for two days, and I have a memory of what he looked like. I wish now that I had had something, some kind of picture, something that I could have remembered what he looked like," she said.

The Kahns credit the memory box with helping them hold on to the memory of their son, and to heal.

"It took us so long to have a baby. We just wanted to spend every second with him," Kristen said.

Zachary and Jason, now just over 3 weeks old, were born five weeks prematurely. Luckily, they are both healthy, although Zachary needed to briefly revisit the NICU because he had difficulty breathing. Fortunately, he pulled through and was discharged with a clean bill of health.

Maia's Story

While Larry and Kristin have known both extremes -- losing a baby and taking two healthy babies home -- another couple, the Goldmans, cope with a different problem: the long-term health status of their premature daughter, Maia.

Maia was delivered Jan. 12 at just over 30 weeks -- which is 10 weeks short of the 40-week gestation period needed for the maturation of vital organs. And while she looks healthy, she was born with only one working kidney, and that one doesn't work very well.

Dialysis and an eventual kidney transplant loom, if she can grow to the requisite size needed to receive a new kidney.

And so another set of parents, Matt and Masumi Goldman, face the possibility that their first child might not make it.

"Apparently, this isn't a genetic thing, just really bad luck. Why's this happening and why can't I do something to fix it?" Masumi said.

Close by, Matt's mother, Liz Goldman, a retired pediatrician, said she was doing whatever she could to help Maia get well -- even if it meant talking to the damaged organ to tell it what to do.

"I chat with her kidneys every day," Liz said. "I just want to be grandma. I don't want to know numbers. If the nurse says go buy preemie clothes at the Gap, well OK, you know, it's hope, hope."

But Dr. Jack Lorenz, a neonatalogist, has become concerned about Maia as the extent of the problem becomes clearer.

"This baby hasn't got renal failure that will cause death in the near future, but it will make it very difficult for her to grow and develop," Lorenz said. "And I think we can offer the family long-term survival [it's going to be with risk], and prospects for success are certainly not even 50-50."

The Goldmans have remained hopeful, though. "I think she's doing really well, and we just need to give the kidneys time," Masumi said.

At a staff meeting, Lorenz discusses Maia's situation.

"It's time to stop saying the kidneys are going to get better," he said.

The time has come for a heart-to-heart talk between the medical team and the family.

And the following day, a large group assembles -- the medical team, the parents, the grandparents -- and the door stays closed for a long time.

Check back tomorrow night to see the conclusion of the Goldmans' story.