Encore Presentation: Babies on the Brink
Aired February 23, 2002 - 20:00 ET
THIS IS A RUSH TRANSCRIPT. THIS COPY MAY NOT BE IN ITS FINAL FORM AND MAY BE UPDATED.
THIS IS A RUSH TRANSCRIPT. THIS COPY MAY NOT BE IN ITS FINAL FORM AND MAY BE UPDATED.
(BEGIN VIDEO CLIP)
UNIDENTIFIED FEMALE: Somebody tell that charge nurse we're doing a code.
UNIDENTIFIED FEMALE: He's alive because of technology. And without major interventions, he would not be with us.
UNIDENTIFIED MALE: Were we still in the days where there's no ventilation, many of these children would pass away soon after birth. And so, if God is what would have happened under the natural setting, and then we're definitely interfering with his work.
UNIDENTIFIED FEMALE: And (UNINTELLIGIBLE) from 140 to 24.
UNIDENTIFIED MALE: We should tell parents exactly what the risks are, as we get down to the lower limits of liability, because they were the ones who have to deal with the long-term consequences. And many of these consequences are life long.
(END VIDEO CLIP)
AARON BROWN, HOST: Welcome to CNN PRESENTS. I'm Aaron Brown.
There is a moment in every new parent's life when it really hits you. This is real, this is my child. I'm actually a parent. A parent I know once said in that moment so begins a lifetime of worry. But for most of us, the worry doesn't really begin in those first few moments of life. And then, there are those parents whose child is born too early or born sick, and the worry begins in the delivery room if not before, and can and often does last for years.
Their first hope is what's called NICU, or neonatal intensive care unit. And as all those who enter are quick to learn, life in the NICU is drama defined, a rollercoaster miraculous saves and agonizing decisions. It is hope and fear each and every day. "Babies on the Brink" is reported now by Eileen O'Connor.
EILEEN O'CONNOR, CNN CORRESPONDENT (voice-over): It's 4:00 on a Tuesday afternoon. Hailey Lewis is delivering her baby early. The first signs of labor came at 20 weeks, the halfway point of a normal pregnancy. HAILEY LEWIS: I was a wreck. The neo-natologist said come and talk to me and had told me what would go on with the percentage of, you know, having problems.
O'CONNOR: She and doctors at Inova Fairfax Hospital for Children, outside Washington, D.C., succeeded in keeping her triplets in the womb seven more weeks.
LEWIS: 27 weeks. So it was every encouraging, although every day and every week is better. They were actually breathing and I heard them cry.
O'CONNOR: 13 weeks early and triplets.
LEWIS: They were just little miracles, you know. We're blessed.
O'CONNOR: Each weighs little more than a pound and a half, a bit bigger than a normal loaf of bread. That, and their early arrival, has guaranteed them spots here, in the neonatal intensive care or NICU at Fairfax. One of the most advanced in the country, more than 1300 babies pass through its door every year.
UNIDENTIFIED FEMALE: I think they're doing pretty good.
UNIDENTIFIED FEMALE: Pretty good? She's got to breathe in air with a paper tube?
UNIDENTIFIED MALE: Pretty darn good.
UNIDENTIFIED FEMALE: That's darn good.
O'CONNOR: Their chances for survival, close to 90 percent at this hospital. And if they live, they have the same odds intact, meaning with no lasting physical or mental disability. The next 24 hours will be critical.
Today, cutting edge technology, coupled with advanced research, has given doctors the chance to save more babies, like the Lewises, and those even smaller, babies as tiny as one pound or less and as young as 22 weeks of gestational age.
Some of these children end up with disabilities, but the end result is seldom clear to doctors and parents at birth.
JOYCE STEPHANSKY, BEN'S MOM: And these are his first footprints and first hand prints.
O'CONNOR: Joyce Stephansky and Brian Powilatis are parents to Ben, born more than six months ago.
STEPHANSKY: That's my husband's hand in relationship to his fingers.
O'CONNOR: Ben's stay here has been like many, a journey of ups and downs that everyone calls the NICU rollercoaster. STEPHANSKY: The series of taking two steps forward and six back. And you know, and that's what it's been like for seven months. And it's not easy, you know, but -- so we have our baby, you know.
O'CONNOR: Born at 27 weeks, Ben was actually developmentally. He'd stopped growing in the womb three weeks earlier. Early on, Ben's doctor, John North, warned his parents of the risks associated with treating very premature infants.
JOHN NORTH, PHYSICIAN: The family knew that there was going to be times where we would be faced with decisions about whether to continue with this support or not. The difficulty was in -- as it is with all small babies like this, predicting that point.
O'CONNOR: Nationally, the number of babies born premature is on the rise. It equals about one out of every nine births. The more premature, the less chance for survival. At term, 38 to 42 weeks, the survival rate is greater than 98 percent. At 30 weeks, the rate of survival is 95 percent. Hit 25 weeks, and it is little better than 50 percent. When you reach the limits of viability, 22 to 23 weeks, and a weight of less than a pound, the odds of surviving can be as low as 1 out of 100.
For those smallest babies who beat those steep odds, as many as 80 or 90 percent can have lasting disabilities. Despite the statistics, parents are often compelled to fight for their baby's life, using every means of technology.
STEPHANSKY: He's had nine surgeries. The first surgery at two days old. And he only weighed a pound and five ounces. So he looked like a little baby bird without the feathers, thank God.
O'CONNOR: Ben's lungs also aren't developed enough. So he breathes through a hole in his throat. A ventilator pushing air into his lungs is essential.
STEPHANSKY: Time to sleep little bird, little bird.
O'CONNOR: For moms and dads, it's an overwhelming and often- difficult situation, holding the tiniest infants isn't possible, since they're so fragile. Each day after visiting, parents must return to home without their baby. And friends don't know how to react.
STEPHANSKY: It's hard on other people, too. You know, you have this baby that everyone's saying will not survive. So do you say, "Congratulations" or do you say, "I'm sorry?" Yes, I love you and you love me. You think so? I think so.
O'CONNOR: Ben is not yet breathing on his own or eating solid foods. Yet, there is hope. He may be going home soon, according to one of his doctors.
So you think, so far, so good?
UNIDENTIFIED MALE: It's great, yes. I couldn't be happier.
STEPHANSKY: Like to hear that. Did you hear that? You're doing great.
O'CONNOR: Not every baby that ends up in the NICU is premature. Across the hall is Andrew Abbott. He was born at term, like about half the babies here. Much new technology can help him, as well.
UNIDENTIFIED MALE: Yes, let's see your profile.
O'CONNOR: The pregnancy was perfect.
HEATHER ABBOTT, ANDREW'S MOM: This is the changing table.
O'CONNOR: And like most parents, Andrews planned the perfect, uneventful homecoming.
UNIDENTIFIED MALE: Hey, you want to announce the name?
H. ABBOTT: I think we have decided on Drew.
O'CONNOR: Andrew should have been fine at birth, but his exterior hid an awful twist.
H. ABBOTT: They took him to the operating room. And that's when they found that all of the large intestine was dead and that about 45 centimeters of the small intestine, which is about a third of it, was also dead.
He's lost all his hair. He's a little Q ball.
ROBERT BECK, INOVA FAIRFAX HOSPITAL: He has what you call short gut. And we've not been able to deliver formula, breast feeding, or breast milk or any kind of material successfully into his gut at this point, but we hope as time goes along, that'll happen.
H. ABBOTT: This is my favorite, you know.
O'CONNOR: He's had three surgeries thus far to cut out the dead tissue in his intestines and connect the remaining pieces that are alive. He's also battling a fungal infection from the feeding lines inserted in his body.
H. ABBOTT: He was more awake today. And his fever's gone. His blood counts were better. He seems a lot happier, which is comforting for me, yes. He doesn't seem so sick.
O'CONNOR: Like many of the smaller babies at Fairfax, nobody knows how long it will be before Andrew is healthy enough to go home.
Meanwhile, another baby is about to board the rollercoaster at Fairfax. Transported in by ambulance, he was born just a few hours ago at 24 weeks. He is tiny, weighing just under 20 ounces. Four months early, his struggle to survive has just begun.
O'CONNOR (voice-over): Born just a few hours ago and transported into Fairfax, Adrian Millisock has the full attention of the staff in the NICU.
Eyes still closed, the 24-weeker is immediately hooked up to feeding tubes, monitors, and a ventilator.
UNIDENTIFIED FEMALE: We're going to have to check that way up.
O'CONNOR: Born in another hospital, his parents have yet to arrive.
UNIDENTIFIED FEMALE: He was at (UNINTELLIGIBLE) then transported.
UNIDENTIFIED FEMALE: Hello, is this mom? Mrs. Millisock? Hi, I just want to let you know, I'm one of the neo-natologists at Fairfax and taking care of your son. And he arrived safe and sound. He's looking really very good.
O'CONNOR: 100 years ago, preemies like this were left to die. That was until the invention of the incubator. It cocooned a premature infant in warmth and oxygen. These devices so fascinated the public, that in the early 1900s, German doctor Martin Cooney (ph) sold tickets to see the babies thriving.
WILLIAM SILVERMAN, PEDIATRICIAN: Martin Cooney (ph) was a very colorful pediatrician. And the interesting thing is that his results were quite good.
O'CONNOR: Pediatrician Dr. William Silverman was in medical school at the same time Cooney (ph) slumbering babies were still fascinating. Sold out audiences in Europe and the United States. They even appeared at the New York World's Fair of 1939 and Coney Island. In total, Cooney (ph) cared for 8,000 babies. A whopping 6,500 of those survived.
SILVERMAN: It was an uphill fight. Cooney (ph) could not get doctors in this country interested in keeping very minute infants alive, because they were worried about long-term consequences.
O'CONNOR: Eventually, incubators became more widely accepted, enchanting the likes of Eleanor Roosevelt. But incubators couldn't save every baby.
UNIDENTIFIED MALE: The dramatic miracle of birth and a fight for life takes place as Mrs. Jacqueline Kennedy bears a premature son.
O'CONNOR: The idea of ventilation didn't come to the public's attention until 1963.
UNIDENTIFIED MALE: As is often the case with premature babies, Patrick had difficulty breathing.
O'CONNOR: That's when President John Kennedy's newborn son, Patrick, died from respiratory complications, following his birth at 34 weeks.
BECK: When you didn't particularly have any kind of tubing to put in the children's throats, to support breathing. We then certainly did not have any kind of pediatric ventilator. Then you would lose these children.
UNIDENTIFIED MALE: The biggest change that we've had is the way we can breathe for him and the type of ventilators that we can use to treat the infants.
O'CONNOR: Today, there have been numerous other advancements in technology. Incubators resemble space capsules, with tops that pop off and advanced controls that regulate heat and humidity. Food is delivered through tiny tubes. Blood results are shown almost immediately. And machines chart every tiny breath and heartbeat.
UNIDENTIFIED MALE: We're going to be doing an echocardiogram on this little guy. This will give us an ultrasound image of the baby's heart. And I'll be measuring the blood flow going through the chambers. And I should be able to see that with the color flow Doppler that we use.
O'CONNOR: In 1990, the development of a new drug, that mimics a vital substance lacking in the lungs of the smallest preemies, pushed the limits of viability even further. Cultivated from the lungs of calves, surfactant allows babies as tiny to 22 weeks to be saved. Before that, the baby's lungs are too immature to survive.
AMY MCCABE, NURSE: Premature babies don't have as much surfactant intrinsically. And it actually decreases the number of days that they're on the ventilator and allows them to have less basic lung trauma.
O'CONNOR: One baby who has benefited from surfactant is Adrian Millisock. A week after birth, he's stable, yet his parents are cautious.
KENNETH MILLISOCK, ADRIAN'S FATHER: They did an ultrasound on his brain to see if there's any blood on the brain. And that came back negative. There's no blood on the brain. So that's a good sign.
O'CONNOR: Severely premature babies like Adrian have tiny blood vessels, making them more prone to internal bleeds. If it's in the brain, it can be a sign of potential problems down the road. Like mental retardation and cerebral palsy.
UNIDENTIFIED FEMALE: He'll end up being for a few months, right?
UNIDENTIFIED FEMALE: I think so.
K. MILLISOCK: We're going to have him for a while, and see how he develops and everything.
O'CONNOR: Down the hall, another baby is using all that technology has to offer.
JOHN ARANEO, JACK'S FATHER: Uh-oh, what did we do?
O'CONNOR: Hym and John Araneo welcomed twins into the world a few weeks ago. Zach is ready to go home, but Jack ended up here in the NICU.
J. ARANEO: You're just like Popeye today.
O'CONNOR: Jack is evidence that multiple births are on the rise. Most are twins, like the Araneo boys. They're numbers increased 50 percent since 1980. Triplets and other multiple births have skyrocketed close to 500 percent.
The leap is often credited to the growing use of fertility drugs and invitro fertilization. Multiples tend to end up in the NICU because of their size and early arrival.
Jack's difficulties began when he stopped growing in the womb. He was half the size of his brother. He also has Down's Syndrome. He's suffering from a bloated stomach. A barium X-ray is ordered to find out why.
UNIDENTIFIED MALE: Hold him right there.
UNIDENTIFIED FEMALE: Hold him?
O'CONNOR: The doctors hope the tests will find some blockage, but it doesn't. The result only confirms that Jack's underdeveloped intestines, a common ailment in small preemies, are slowing down his digestion, putting pressure on his belly and causing labored breathing. His parents must wait for him to improve.
Jonathan Dearing weighed the same as Jack Araneo at birth, a little over two pounds. Jonathan's breathing with the help of a sophisticated device, called a C-Pack. It both gently pushes air in and pulls it out, without using a tube in the throat or a ventilator.
Born at about 26 weeks yesterday, he has a better than 80 percent chance of survival. Still, he's already encountered some steep dives.
UNIDENTIFIED FEMALE: He came in yesterday morning and did so well from the start. As a 26 weeker, he did very well and did well this morning. And then, he just kind of crashed and burned.
O'CONNOR: An infection is discovered. And it's stressing out Jonathan's system. Premature infants are prone to infections, because their immune system hasn't fully developed yet.
UNIDENTIFIED FEMALE: Everything happened kind of fast. We got him back on the ventilator. We did X-rays. So we just have to pretty much (UNINTELLIGIBLE) every act of what he does. He's not supposed to be here yet.
O'CONNOR: With the help of medicine and Jonathan's dad, the infant calms down and starts to fight the infection.
UNIDENTIFIED MALE: Yes, his color's a whole lot better at this particular point. So you know, I'm pretty happy with him at the moment. And so we'll just, you know, keep giving him breathing help he needs and give his body, you know, the time to mount a good response against this business.
UNIDENTIFIED MALE: OK. All right.
UNIDENTIFIED MALE: Reach in there and give him a squeeze, if you want.
UNIDENTIFIED MALE: Thank you, all right.
UNIDENTIFIED MALE: All of this happened, really, in the scope of this afternoon. Speaking to these children's fragility and speaking to their tendency to be unstable.
UNIDENTIFIED FEMALE: Doing great today. Doesn't he look good?
UNIDENTIFIED MALE: Yes, he does.
UNIDENTIFIED FEMALE: Yes.
O'CONNOR: Two days later, Jonathan Dearing, the 26 weeker, successfully battled his first challenge.
UNIDENTIFIED MALE: I mean for the most part, he's doing much better.
UNIDENTIFIED FEMALE: Much, much better. Doesn't he look much, much better? He really does.
O'CONNOR: But born so young, the fight may not be over.
O'CONNOR (voice-over): Two weeks old, Jonathan Dearing, born 14 weeks early, is experiencing another valley in the NICU. While doing rounds, Doctors Beck and Baker notice some irregular breathing.
BECK: He's making sounds, but he's making gurgling sounds. Something's obstructed. So let's see if we can clean his tube.
O'CONNOR: Quickly, they assess Jonathan's situation.
BECK: Change his tube.
O'CONNOR: And insert a new tube in his throat, so a ventilator can push some air in his lungs. Once he's stable, they move onto the next bed. On any day, close to 60 infants are here in the NICU.
UNIDENTIFIED FEMALE: People visit, change a diaper.
O'CONNOR: A baby who has received a lot of attention during the past six months is Ben Powilatis. A glance at his records reveals that he's experienced brain bleeds, seizures, and other potentially other deadly setbacks. Cerebral palsy is suspected.
STEPHANSKY: He's alive because of technology. And without major interventions, he would not be with us. Drawing the line was difficult.
O'CONNOR: During one life-threatening episode, the couple was asked if they wanted to go to extraordinary measures to keep Ben alive. They decided to keep going, unless Ben endured one more complication. If that happened, they would let him go.
STEPHANSKY: It was very difficult decision. It never happened, thank God. And at that moment if it had happened, would we have had said no more? I don't know. I really don't know.
There would be times that I would think he can't take anymore. And he would look at him, "Don't you give up." And that would give me the strength.
ROBIN BAKER, PHYSICIAN, INOVA FAIRFAX: It's a moving target. I mean, what you see when an infant's born may be great. And then at some time, they may develop a -- you know, a severe bleed, a severe hemorrhage, a stroke. And at that time, you know, things change. And your decisionmaking process changes.
BECK: They make their decisions based on a certain element of optimism and a certain element of the unknown. And they're trusting, you know, to a good outcome.
O'CONNOR: And what if the parents in the hospital don't agree on a course of action?
NORTH: If there is a circumstance where a family does not want intervention, but we think that the state of the art, the standard of care involves that intervention, we will go to whatever lengths we need to, to provide that for the baby, because we still do feel like our primary obligation is to the infant.
SILVERMAN: When I was young, I felt that way also.
O'CONNOR: Dr. William Silverman is considered a founding father of neo-natology. He wrote one of the first textbooks on the subject in the '60s. Since then, he has begun to worry about where the field is headed.
SILVERMAN: And I think we should be guided by the parents' decisions, because they're the ones who have to deal with the long- term consequences. And many of these consequences are life long.
: Faith Fallon was born premature at 25 weeks in a South Carolina hospital. Faith's chances for survival were just over 50/50. Yet Christina, her mother, says she was not given the choice to make a decision about whether to keep her child alive with extraordinary means. Fearing the worst, Kristina waited three days before visiting the NICU, afraid Faith would die.
KRISTINA FALLON, FAITH'S MOTHER: I went and saw her finally. They wheeled me down the hall. Then when I first saw her, she wasn't (UNINTELLIGIBLE). She was tiny and red and wrinkly, but she was my little girl. And I don't know, she was beautiful.
O'CONNOR: Today, Faith has cerebral palsy, lung and brain damage, and cannot crawl or walk.
K. FALLON: Breakfast.
O'CONNOR: Most of her food still comes through a tube into her stomach. Yet, she's beaten the doctors' predictions.
K. FALLON: And they said she would pretty much be a vegetable. And because of the ventilator damage to her lungs, she would probably dies by age 2.5 And she would most certainly die by age 5.
O'CONNOR: Faith is now 6 and enrolled in a special needs class at school.
UNIDENTIFIED FEMALE: Nine, good girl. All right, we're going to go over all the questions, all about you. Tell me, what is your name?
FAITH FALLON: Faith Fallon.
UNIDENTIFIED FEMALE: That's right.
O'CONNOR: She also receives speech and physical therapy several times a week.
UNIDENTIFIED FEMALE: Come on, Faith. Good girl.
O'CONNOR: Kristina is lucky to have her family nearby. They help care for Faith. Yet she has concerns for the future.
K. FALLON: How do I pick up 100 pound kid?
UNIDENTIFIED FEMALE: Let's push the ball.
K. FALLON: I mean, if she hasn't gained some ability to help transport yourself, you know, from the chair to the bathtub or the couch or to the bed, I mean, how are you going to do all that? I'm worried about her self-esteem, if she gets to be a teenager and all those things. You think about them all the time.
UNIDENTIFIED FEMALE: You want to see it for a minute?
F. FALLON: Yes.
O'CONNOR: Kristina wishes that doctors in her NICU had informed her more about Faith's chances and listened better.
K. FALLON: I mean, I asked the doctor, "Why are you doing this to my child? You know, "her odds are not good." You know, "and you keep doing this. And I've asked you not to do this." You know, "Don't put her through any more pain." You know, "Why? Who are you to do this?"
And she looked at me and said, "Well, we learn from children like this." And just that tone of voice. And I'm just like -- you know, I just looked at her. I just stood there for a moment because I could not fathom that somebody could take that tone about a human life, you know, and a baby.
O'CONNOR: She was so outraged at her hospital's treatment, that she transferred Faith to another facility. Later, she co-wrote a letter to "The Journal of the American Medical Association" with other parents of low birth weight preemies, demanding that they be involved in all decisions.
The doctors at Fairfax strive to include everyone in the decisionmaking, sharing the concern in these parents.
BECK: For many families, it's a considerable stress to deal with a disabled child. And there are many parents who will write letters into the journals, and say, had I known at the time, you know, my decisionmaking would have been entirely different.
You know, it would be great to have a time machine in the delivery room before birth and take people forward and see how it's going to turn out. Unfortunately, we don't have that certainty.
K. FALLON: I think this is something that everybody has to decide on their own. That's why I'm saying families should have some say. Yes, I mean, the doctor's creed, you know, first do no harm. I can understand they want to save these children, but in the long run, do they do more harm than they did good?
SILVERMAN: I think the word save is -- one of the problems here. The word save sort of implies that everyone lives happily ever after. I think we should talk about prolongation of life and the quality of that prolonged life.
BECK: Were we still in the days where there was no ventilation, many of these children would pass away soon after birth. And so, if God is what would have happened under the natural setting, then we're definitely interfering with His work.
BAKER: And yes, it does put you in untenable situations from time to time, but that, fortunately, is very few and far between.
O'CONNOR: The issue of prolonging life has even fueled some multi million dollar lawsuits. Parents are suing hospitals for saving their child's life, against their wishes.
K. FALLON: If I known what I know now, I don't think I would have ever gotten pregnant. And I don't think I would have went to the hospital that night. She's a wonderful little girl. A lot of days, you know, she'll make you laugh. She's just lights up your heart.
O'CONNOR: To better predict outcomes, Fairfax, along with about 300 other hospitals in the United States and worldwide, compile and share their data about methods of treatments, recovery rates and new techniques.
Over time, some trends have emerged. Generally, the older the baby is at birth, the better his or her chances.
UNIDENTIFIED FEMALE: Hold you hand. So she can say hi.
O'CONNOR: Girls tend to do better than boys. With small black girls doing the best and white boys, the worst.
FERN LITMAN, PHYSICIAN, INOVA FAIRFAX: We try not to refer to them as wimpy in front of their parents or in front of them. As far as a real reason, it's not there. But female infants to seem to do better. They are definite studies on that.
UNIDENTIFIED FEMALE: I'm hiding the bunny. Where's the bunny?
O'CONNOR: Fairfax also tracks the progress of their former patients with developmental appointments at 6, 12 and 24 months.
UNIDENTIFIED FEMALE: You got it.
O'CONNOR: Kinds of most problems, like cerebral palsy, impaired vision and learning difficulties won't be seen until age two. That means for parents leaving the NICU with an infant, the future is still unclear. Yet, every family eagerly awaits that departure date. For Ben Powilatis, that day is now just a week away.
BRIAN POWILATIS, BRIAN'S FATHER: Well, there's a lot to do. You know, a little bit anxious, but you know, it's the baby we've been waiting for. So it'll be exciting. It'll be exciting.
O'CONNOR: His mom, Joyce, is getting a crash course in all the essentials.
STEPHANSKY: This is the actual ventilator. It will go on a pole. This is the heating mechanism to give him moisture, so that he doesn't dry out. And this will go underneath the pole. And this is the battery. So that'll go on a pole. And we'll have one set up upstairs and one set up downstairs. And we also will have a suction machine to suction out the traech, which has to be done quite frequently.
So we're wondering if they'll be any room for Ben in his room.
O'CONNOR: Flush with excitement, she enjoys a moment of joy every parent shares and leaves the NICU to print up birth announcements about her son. She's gone for just 10 minutes when Ben takes a turn for the worse.
O'CONNOR (voice-over): Almost seven months into his stay at the Inova Fairfax Hospital Neonatal Intensive Care Unit, Ben Powilatis stops breathing.
UNIDENTIFIED MALE: The alarm went off. I was just standing outside. And he was just down...
UNIDENTIFIED FEMALE: And he dropped his heart rate. And he dropped. He went into a relapse from 140 to 25. And he was blue. I'm going to have try and reincubate him.
UNIDENTIFIED MALE: We had to replace his traech.
UNIDENTIFIED FEMALE: Do some CPR, give him some medication.
O'CONNOR: Within 10 minutes, he is fine. And all his levels are normal.
UNIDENTIFIED MALE: He looks pretty good now.
UNIDENTIFIED FEMALE: Yes, he does. He's acting like Ben.
O'CONNOR: It is a scare for the NICU staff.
UNIDENTIFIED FEMALE: And we're not sure why he does this.
UNIDENTIFIED FEMALE: Brian canceled his trip. He's not going until tomorrow. So he's right behind me.
O'CONNOR: When Ben's parents arrive back an hour later, they are shaken.
STEPHANSKY: What are we going to do? It would kill him. It would kill him. I wouldn't know what to do if this happened. I mean, we don't have epinephrine at home. I just left for a little while.
O'CONNOR: Despite the setback and their fears, Joyce and Brian are committed to caring for Ben.
UNIDENTIFIED FEMALE: You know, if you went home, and you weren't afraid, I'd be worried about you because that's not normal.
UNIDENTIFIED FEMALE: You can do this.
STEPHANSKY: OK, I can do it. We can do it.
UNIDENTIFIED FEMALE: You can do...
O'CONNOR: Like Ben's nurse, all the staff gets involved.
STEPHANSKY: The nurses made that for him, actually.
UNIDENTIFIED FEMALE: We just felt that, you know, in the world today, everybody's a number. And it just kind of personalizes the infant. And it kind of makes it more intimate and more personal for the parent as well.
UNIDENTIFIED FEMALE: I have pictures of these kids on my refrigerator. I have their (UNINTELLIGIBLE). And you know, we get attached to these little guys.
UNIDENTIFIED FEMALE: People say to me, "How can you do this?" When you look at this, it's "how can you not do this? How can you, you know, how can you not do this?"
UNIDENTIFIED FEMALE: Look at that.
O'CONNOR: One nurse, Renee Greeger, has been helping babies and parents for more than 20 years.
RENEE GREEGER, NURSE: Always part of the first couple of days, the dream is shattered. And now we have to deal with one problem at a time.
O'CONNOR: Often, the problems eventually disappear.
GREEGER: Hope is something we have here within us, a great deal of, I have to say. And we've all experienced miracles.
O'CONNOR: One miracle baby at Fairfax was a little boy named Justin Ilar.
PAM ILAR, JUSTIN'S MOM: I just remember hearing this little "Ah." You know, it was just barely recognizable. And he looked like an embryo, you know.
O'CONNOR: Born at 25 weeks and weighing just 13 ounces, he had little chance of survival.
ILAR: Dr. North came and spoke about what could happen. Babies, you know, don't come in the world this small and not have challenges. And he might not have the fight in him or the will or the strength or you know, he may not make it.
O'CONNOR: Did you ever have a conversation with your husband that said, "OK, if something really bad happens and we get to this point, what are we going to do?"
ILAR: Yes, yes, that conversation. And the conversation goes, "We don't want him to suffer. That's the number one thing. But if he's trying to stay alive, we got to be there." Yet, he's just the strength, you know, to be so tiny and to just hang in there and keep hanging in there and keep hanging in there. If he's going to hang on, we don't have any excuses.
O'CONNOR: Six years ago, Justin Ilar was the smallest baby born at Fairfax to survive. Today, his eyeglasses are the only reminder of this experiences as a preemie.
JUSTIN ILAR: I was faster than you. ILAR: Were you faster than me?
Well, we were lucky, you know? We were lucky, very lucky. But we blessed. I see that now, that we were blessed. It was nothing but God.
BECK: I love the fact, you know, that he's done well and that his mom is as happy as she is and that their family, you know, is really -- has done well with this whole thing. It doesn't really change the uncertain characteristics of this though, because day in and day out, you know, we have our successes. And they are thrilling. And we have our disappointments. And those are devastating.
O'CONNOR: Full term baby Andrew Abbott is hoping to be a miracle, too. But his homecoming date is still unknown. That's because there is little food moving through his remaining intestine. So it's decided to go in and take another look.
BECK: This is recent surgery. He's got a period of time where his bowel is really asleep. And we have attempted to start feedings on him, with continuous drip feedings. He's been throwing them up. Clearly, he's at risk, but he's showing good signs he's going to tolerate the feedings. And so, we're hopeful.
O'CONNOR: Adrian Millisock weighs in a lot less than Andrew. Even though he's only been here a short time, his family already understands the nature of life in the NICU.
KENNETH MILLISOCK, ADRIAN'S FATHER: We go day by day. We pray every night. You see things like this on TV every day, but you never expect it's going to happen to you. You always expect it's going to happen to somebody else, until it really does happen to you. And then, your life changes just like that.
O'CONNOR: And if Adrian ends up having some problems later in life?
K. MILLISOCK: No matter what the outcome's going to be, he's still my son.
UNIDENTIFIED FEMALE: The goal now is to get him home. And when I get him home, I'm going to like being like he's any other baby.
O'CONNOR: Before Jack Araneo can go home, the staff would like the tiny, premature twin to breathe on his own. But just as they try to take him off the ventilator, he crashes.
UNIDENTIFIED FEMALE: Will somebody tell the charge nurse we're doing a code? UNIDENTIFIED FEMALE: We tried taking the breathing tube out because he had very low ventilator settings. He was doing most of the work on the ventilator. We tried putting the breathing tube back in, and we were unsuccessful. And that was why we were (UNINTELLIGIBLE) him. And that's why his heart rate dropped. We had to do chest compressions (UNINTELLIGIBLE).
We then were able to get an airway and breathe for him with the ventilator. And that was when we were able to stop the chest compressions. Now his vital signs are stable and his blood pressure's fine.
O'CONNOR: The whole episode with Jack Araneo lasts less than 10 minutes. Still, it takes a toll on his nurse.
What keeps the staff going here is the knowledge that most of these kids are going to recover and go home. Each year, Inova Fairfax invites the past patients of the NICU to a reunion.
UNIDENTIFIED FEMALE: Oh, my goodness!
UNIDENTIFIED FEMALE: We're pretty proud.
UNIDENTIFIED FEMALE: He was a 28 weeker, but he is...
UNIDENTIFIED FEMALE: He's big, isn't he?
UNIDENTIFIED FEMALE: He's big. I am a big boy.
O'CONNOR: It's a chance for the caregivers and parents to touch base again.
UNIDENTIFIED FEMALE: Nice to see you Dr. Beck.
O'CONNOR: And for doctors and nurses to see the progress of their former patients.
UNIDENTIFIED FEMALE: Good to see you.
UNIDENTIFIED MALE: I was born in 1977 and I weighed 2.5 pounds.
BAKER: The reunion is really sort of the icing on the cake. It makes you feel great. Yes, it's really fun.
O'CONNOR: Before any of these Fairfax graduates finally made it home, they endured many weeks in the NICU. For many families, their goal is to attend the reunion next year.
The waiting is the hardest part. And few have waited as long as Ben Powilatis. He is coming home after spending 202 days in the hospital.
STEPHANSKY: I just can't believe it. I just hope we're ready. I think we're ready. It's weird, because I feel a little bit sad, too, because we've -- you know, we have to say good-bye to people who saved Benjamin's life. You know, and how do you say thank you? UNIDENTIFIED FEMALE: Bye-bye.
STEPHANSKY: Bye. I don't want to say good-bye.
UNIDENTIFIED FEMALE: Yes, we know.
O'CONNOR: Ben's parents, like most of the moms and dads here, participated in his care. Now their care will be essential to his survival. Around the clock nurses will help ease the burden.
It's a happy day, but long-term, no one is sure of his future. The doctors won't give Brian and Joyce a life expectancy until Ben reaches three years old.
BECK: He still has a good deal of respiratory problems to overcome. And his outcome is far from certain in terms of his normal development down the road.
O'CONNOR: Several weeks later, Jonathan Dearing is really to leave the hospital, too. Despite having a tiny brain bleed early in his stay here, he's doing well.
UNIDENTIFIED FEMALE: Got some nice tone coming in. His head control is starting to kick in.
O'CONNOR: He now gets therapy to help his muscles develop. He's drinking from a bottle. And his parents are taking an all-important CPR class to prepare them for life at home. Four days later, he is out the door.
Back in the NICU, Andrew is waiting his turn.
H. ABBOTT: For the first time in his 95 days of life, he is not attached to anything. So I'm holding him for the first time with nothing. He's doing really well. Still planning to go home next Wednesday.
O'CONNOR: With his bowels finally moving food, he is given a date to go home, too.
ABBOTT: If it happens Wednesday, it'll be -- it will have been 99 days, which I think that's a nice number to go home on. That'll make a good story.
O'CONNOR: Two days before leaving, his plans are scratched. He has developed another massive infection and must wait to recover.
O'CONNOR (voice-over): Three weeks after his arrival at the NICU, young Adrian Millisock was stable enough to be flown close to his parents in Pennsylvania. Three months later, he goes home with only some oxygen support, weighing almost five pounds more than at birth.
STEPHANSKY: And we like to dance with mama.
O'CONNOR: Ben Powilatis has been home for several weeks. His parents are thrilled, yet the reality of their situation is now clear.
STEPHANSKY: I mean, it's wonderful to have him home, but it's incredibly difficult. And as we get through each day, we realize that there are very few people like us. And it's very difficult to let anybody know what we go through, just on a day to day basis.
O'CONNOR: He's also endured a few hospital stays since his first homecoming.
B. POWILATIS (singing): If you're happy and you know it, clap your hands.
By the time each of Ben's medical bills is added up, the sum will easily top $1 million. However, all that money and technology can't guarantee Ben's future. And it's such uncertainty that bothers family and the NICU staff, as they work with each infant.
BAKER: To be honest with you, I'd like to see the children 20 years down the road, because I'd like to make sure that there's nothing I'm doing now that's going to cause them trouble in 20 years. I mean, that's what you just don't know.
O'CONNOR: For Jack Aranio, there are more urgent concerns. After improving a bit, the tiny twin is not thriving. More surgery is ordered. His lungs are so damaged, a tracheotomy is done so he can breathe, a stomach tube is also inserted. But as the doctors and nurses know all too well, even the best care cannot save every child, and Jack, they say, is an unusual case.
A month later, he suffers a massive systems failure.
UNIDENTIFIED MALE: It became obvious that Jack was not going to survive. After a lengthy discussion with the parents and all of those people involved, including nurses and other physicians, it was really decided that the best thing for Jack was to let him die being held by his parents, and with dignity.
O'CONNOR: Jack was just over 5 1/2 months old when he died.
UNIDENTIFIED MALE: It takes you a long time to get over, but you learn from every child, and you try your best with every kid.
O'CONNOR: Back at Fairfax, Heather Abbott finally hears the good news she has been waiting for. Andrew is being discharged.
H. ABBOTT: And I just burst into tears of just joy. And finally like really believed that this was going to happen.
O'CONNOR: The hope is that soon, Andrew will be eating food, just like everybody else. H. ABBOTT: They told us that in a few years, whatever we eat, he eats. You know, if we have spaghetti for dinner, he has spaghetti for dinner. He should grow and talk and walk and play, just like any other kid.
O'CONNOR: It's a moment for good-bye.
UNIDENTIFIED FEMALE: We're going to miss you, though. Yes, we are.
O'CONNOR: And then he's into his new car seat and whisked off.
As Andrew sets off, another baby is coming in, ready to board the NICU rollercoaster. The staff kicks into gear. And like always, no one knows how rocky the ride will be.
BROWN: Quality of life versus the sanctity of life, and that is the dilemma that is only going to grow as medicine advances in the neonatal intensive care units.
But while the public policy debate grows, it remains just that, a public policy debate. For new parents, it's something else. It can be the most gutwrenching dilemma they will ever face in their lives. And in those moments, when a life is threatened, for the families the first question is a simple one: Can this life be saved? With every passing day, more and more, the answer is going to be yes, but then other questions emerge. Like what quality of life will my child have? And questions like that are far more difficult to answer.
That's this week's edition of CNN PRESENTS. I'm Aaron Brown. Thanks for joining us. We'll see you in a week.
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