Coming to Terms with Prematurity

Advice for preemie parents and professionals in the NICU.

Interview with William H. Woodwell, Jr., by Allison Martin

What did you find most difficult during the time your child was in the NICU?

The most difficult thing was trying to go about "normal life." Although I didn't keep the same work schedule as before and was trying to be at the hospital whenever I could, I kept working through the experience. And I remember thinking that my work was basically insignificant and meaningless in the face of everything else that was going on. I also remember finding it hard dealing with other people sometimes-like the one client who kept pestering me for photos of our daughter for her office bulletin board when the only photos we had were of Josie all hooked up to the ventilator and IVs and everything else. (Not your average cute baby pics.) The bottom line is people just don't understand unless they have been there, and the things they say and do can grate on you sometimes. That's why it's so important, I think, to hook up with other NICU parents - people who know what you've been through and have stared down all the same demons.

What did you learn from your experience in the Neonatal Care Unit?

One thing I learned is that I have a couple of real survivors in my house-namely, my wife, Kim, and daughter, Josie. You see the people you know and love come that close to the edge, and you look at them a little differently from that day forward. And it is not just their lives you start to appreciate more. It is your own life, too. You watch a couple of one-and-a-half pound babies fight like crazy just to live, and you realize there has got to be something to fight for, that life is precious, and that you have got to do all you can to make it matter.

What advice do you have for other parents of preemies? For professionals in the NICU?

To other parents of preemies, I would say congratulations. I would also say reach out. Once again, having a baby in the NICU can be such an isolating experience, and the only way to deal with it is to be open and honest, to talk, and even to write. Writing was really my way of coping with the whole thing. And you can accomplish the same thing by sharing your frustrations and feelings with other parents, nurses and anyone else who will listen without judging.

To the professionals in the NICU, I would say thanks for all you do. I know from our experience that NICU staffs work very long hours in very stressful conditions, and they deserve much more credit than they receive. The only advice I would provide is to open things up more to parents. Give them the information they need about the NICU and how it works, create more opportunities for parents to raise questions and have a say in things, and include them as active participants in the health care team.

This is something many NICUs are working hard at, but there is always more to be done. I really believe it was our active involvement in Josie's care early on-by kangarooing her, holding her whenever possible, and learning to change diapers and everything else-that got us invested in her progress and, in fact, helped Josie make it in the end. And that is a tribute to the nurses who pushed us to get involved.

Your daughter was born at 24 weeks gestation, how old is she now and how is she doing?

Josie is five years old and doing beautifully. You would not have any idea to look at her that the beginning of her life was such a crazy time. Because of mild cerebral palsy (CP), she wears a brace on the lower part of her left leg to help her walk. The CP, however, has not interfered in any way with Josie's healthy development and growth, and she now has a younger brother Dean, who was born in 1999. Needless to say, the two of them keep our lives forever interesting.

William H. Woodwell, Jr. is the author of Coming to Term: A Father's Story of Birth, Loss, and Survival.