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CNN Sunday Morning

Babies on the Brink

Aired May 19, 2002 - 07:41   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.
MILES O'BRIEN, CNN ANCHOR: Let's check some health news, shall we? About one out of every nine babies are born prematurely in the U.S. and that often means their health and survival are at risk. It also poses a big medical dilemma for parents and doctors. Babies on the brink is the topic of tonight's CNN presents. Eileen O'Connor has a preview.

(BEGIN VIDEOTAPE)

EILEEN O'CONNOR, CNN CORRESPONDENT (voice-over): A baby who has received a lot of attention during the past six months is Ben Powilatas. A glance at his records reveals that he's experienced brain bleeds, seizures, and other potentially deadly setbacks. Cerebral palsy is suspected.

JOYCE STEPHANSKY, BEN'S MOTHER: 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 a very difficult decision. It never happened, thank God. And at that moment, if it had happened, would we have 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 me, "Don't you give up." And that would give me the strength.

ROBIN BAKER, DR., INOVA FAIRFAX HOSPITAL: 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, severe bleed, a severe hemorrhage, a stroke. And at that time, you know, things change. And your decisionmaking process changes.

ROBERT BECK, DR., INOVA FAIRFAX HOSPITAL: 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? JOHN NORTH, INOVA FAIRFAX HOSPITAL: If there is a circumstance where a famiily 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.

WILLIAM SILVERMAN, DR.: When I was young, I felt that way also.

O'CONNOR: Dr. William Silverman is considered a founding father of neonatology. 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: I think we should be guided by the parents decisions, because they were the ones who have to deal with the long term consequences. And many of these consequences are life long.

(END VIDEOTAPE)

O'BRIEN: And just to prove there's a happy ending to this story, which was shot some time ago, we introduce you to the happy family. Joyce Stephansky, Brian Powilatis, and there he is, Ben, who clearly, as I said to them before we came on the air, he does not look like he was born prematurely. Congratulations to you all.

STEPHANSKY: Thank you very much.

O'BRIEN: And just to give us some timeframe. When was that piece shot and how have things changed the piece was shot?

STEPHANSKY: That was filmed in June and July and a little bit of August. We left the NICU on August 15. Benjamin was seven months old. And we are now almost 16 months year. Benjamin was born at one point, left the hospital at about eight pounds, and now he's over 20 pounds. And he's been doing great. He is very active, as you can see. And he's been getting physical and speech therapy. He can't speak at this time, so he's doing sign language. And he does quite a bit of that.

He's trying to learn to crawl. And he's sitting up on his own. And he's just doing great. We have had a few setbacks. Benjamin received a diagnosis of cerebral palsy, which was really no surprise to us because he had many problems in his long course of stay at the NICU, but as you can see, he's thriving at home. And we're having the time of our lives.

O'BRIEN: Well, tell me, what's it like. And Brian, feel free to weigh in if you like. It seems like it's a bit of a rollercoaster ride. I mean, there is ultimately a good happy ending to this. It was -- because he looks so healthy and seems to be doing so well. But when you hear about these setbacks, what goes through your mind, Brian?

BRIAN POWILATIS, BEN'S FATHER: We're still on alert with him. He is much more stable now at home than he was in the hospital, but you know still, it's getting through this past cold and flu season, we were hospitalized a couple of times. And he still is a pretty fragile baby, but we think, you know, getting stronger, getting bigger all the time. So we're very, you know, have a positive outlook for his long term outcome.

O'BRIEN: You know, he doesn't look like he's a fragile baby. And that might be part of the problem, Joyce. Do you sometimes forget or is it always there in your mind?

STEPHANSKY: It's always there in our mind. We're not necessarily on the death watch like we were when we were in the hospital, but you do worry, you know, being around other children, you know, sets off his ventilator all the time. But you know, you learn to deal with it. We don't know any different. You know, this is what our life has been with Benjamin since the very beginning. So I guess you sort of learn to roll with the punches, take one day at a time, and just, you know, do what you can to help him out.

O'BRIEN: Is he your own child?

STEPHANSKY: Yes, he is.

O'BRIEN: OK. So it's tremendous focus of your life. How -- this is almost a dumb question, I guess, but if you could try to quantify it for us, because anytime you have a child, it changes your life. But how much has Benjamin changed your life? And I assume most of it for the good?

STEPHANSKY: Yes, all of it for the good. I mean, you know, everything has changed. We have nurses in our house, 20 hours a day. And you know, which has been wonderful in so many ways. But still, you know, essentially strangers in your home. But our life revolves around Ben. You know, it's a little bit harder to get out there and you know, even going out for a walk is a little more difficult, but we manage to do it.

His day is mainly in the house. And that's diferent from my life before. I'm not working anymore for the time being. So that's different, too. But you know, we make the best of it. You know, you can't pick and choose what happens in your life. And we were lucky to have Ben come our way.

POWILATIS: He's provided us with quite an education, both medically, as well as you know, understanding what's really important in life.

O'BRIEN: Well, you mentioned that education, Brian. That leads me to the next question I had on my mind. As you look back on everything, knowing what you know now, are there any decisions you made that you would make differently now?

STEPHANSKY: None at all.

POWILATIS: I can honestly say no.

STEPHANSKY: No. The doctors and the nurses at Fairfax Neonatal Intensive Care Unit were wonderful with keeping us up with everything that was going on with Benjamin. And I wouldn't change a thing that happened. You know, like I said before, you can't pick and choose what happens. And you know, if he was a healthy baby, he'd be a different baby. So we're happy with our Benjamin.

O'BRIEN: Well, give us, you know, some final words for folks who might be facing the same issue, the issue dilemmas, the same struggle with a premature child right now. What would you tell them?

STEPHANSKY: I would tell them not to give up. Take your cues from your child. And Benjamin was very good at letting us know how far is too far, what to do, and listen to your doctors. Ask a million questions. GO home, do a lot of research on the Internet, because medicine is not an excite science. And it take everybody as a team working together. And don't give up.

O'BRIEN: We keeping you up there, Benjamin? Uh-oh, is that OK? What's that beep all about?

STEPHANSKY: Whenever he gets a little bit fussy, he breathes out too much air. And we get a high pressure alarm on the ventilator.

O'BRIEN: Wow, you're always on tenderhooks, aren't you? Brian, what are you lessons to folks who might be facing the same ordeal?

POWILATIS: Again, you know, you have to make yourself a part of the team, part of the decisionmaking process. So you really have to arm yourself with information. And the doctors and nurses we worked with at Fairfax were terrific in keeping us a part of the decision process, and you know, understand that there are judgment calls that need to be made, and to really understand, you know, the pros and cons and probabilities associated with different courses of action.

O'BRIEN: All right. Well, we will bid adieu to the happy family this morning, let Benjamin get a little nap. And it's good to see him. I'm glad everything is going well. And thanks for your words this morning. I hope they've helped some folks who might be facing the same problem this morning.

STEPHANSKY: Thank you very much.

O'BRIEN: And we appreciate you and letting us intrude in your home.

STEPHANSKY: No problem.

O'BRIEN: Joyce Stephansky and Brian Powilatis, and of course, young Benjamin.

STEPHANSKY: Yes.

O'BRIEN: Seemingly no worse for the wear. All right, thank you very much.

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