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Sunday, March 4, 2007

prematurity, disability, and Past Due

I have been thinking about this for a couple of weeks. On February 20th, there was a story on NPR about the gestationally youngest (known) preemie to survive--ever, anywhere. Her name is Amillia and she was born at 21 weeks and 6 days gestation (a little more than half the gestation of a normal pregnancy). She was 9 1/2 inches long (think ball point pen) and weighed 10 ounces.

Amillia is not the smallest preemie to survive. Two years ago, Rumaisa Rahman was born at 25 weeks and 6 days gestation weighing 8.6 ounces (think lighter than a can of pop). The thing that angered me when Rumaisa's story was all over the media was that people kept saying that she was "perfectly normal," and that they expected her to develop "normally."

The focus of stories about extreme prematurity is often on how the babies were "saved," how they're "miracles." But little attention is given to the long-term effects of severe prematurity. The truth is that it remains the #1 cause of disability among newborns.

The thing that I appreciated most when I listened to Amillia's story was the cautionary note in Dr. Paul Fassbach's voice. He said that Amillia's case was specific, and that though she seemed to be doing well, there were still issues that might arise with her brain development. He said the American Academy of Pediatrics did not recommend intervention in the case of babies as early as Amillia, and he "worries that parents of other extremely premature babies will hear Amillia's story and expect the same outcome."

Now, it's hard, nay impossible, for me to say what I would do if I were in Amillia's mother's situation. Amillia was teetering on the edge of viability. Would I say, no, don't do anything to try to save her? Or would I go all out? I don't know. Can anyone know, for sure, what they would do in this situation? The thing is, I know what can go wrong. I am intimately acquainted with the neonatal intensive care unit (NICU). I know a 23-weeker who had a grade 4 brain hemorrhage, encephalitis, and CP, and who will never speak or walk. But I know 23-weekers who are, except for a slight limp or glasses or math processing problems, fine.

But you can never know. And the question that I keep coming back to (and which makes me very uncomfortable) is this: just because we can save 21 and 22-weekers, should we? How far should we push this? That early, most babies will die, or have severe disabilities. But then there are babies like Amillia.

There is a wonderful memoir called Past Due: A Story of Disability, Pregnancy and Birth by Anne Finger, which explores the complexities of disability and reproductive rights. Finger, who won the AWP Award for Short Fiction in 1987 (for her collection Basic Skills), was one of the last people in the U.S. to get polio. In Past Due, the story of Finger's pregnancy and birth of her son are couched in a larger discussion of disability and reproductive rights.

The book is often gritty. Finger never shies away from the hard questions (as I am probably doing here, by turning to her). She writes about a meeting of the Committee to Defend Reproductive Rights where she was asked to speak about disability and reproductive rights. The discussion was tense, and at the end of the meeting, Finger says, "What it all boiled down to was, did I really think that disabled people were as good as everyone else? Was I really saying that a disabled life was worth living? I was too stunned to respond to them very well. What seemed obvious to me--that a disabled life was worth living; that our lives weren't endless misery--seemed dubious at best to them."

When there are complications with her son's birth and he ends up in the NICU, all of these issues come up again.

Finger has written a several other books; the most recent is Elegy for a Disease: A Personal and Cultural History of Polio. I have not read it, but I will. She's not afraid of asking the hard questions, and I need her help.

4 comments:

Mandy said...

What a difficult question, certainly. Maybe this is weird, but I thought about the opposite spectrum - the ways we have of prolonging life when people are older - the morality of continuing lives that would not naturally continue, and where to draw that line. I'm not quite sure how that is related, so I hope that doesn't seem offensive. I can see how this is a tough subject, though.

Sari said...

After reading your post, I thought of the book "Before and After Zachariah" by Fern Kupfer. Fern is wonderful. And the book is a very real look at having a disabled child. I loved the way she railed against people sentimentalizing the experience. If you haven't read it yet, I'd highly recommend it.

kate said...

Thanks to both of you for your comments. I've thought of this same question, Mandy. And in fact, the end and the very beginning of life are responsible for most of our health care costs. (I need to track down this source...) Thank you, Sari, for the book recommendation. I will definitely add it to my list.

Ambition said...

Kate,
Thank you for this post. I had my youngest daughter at 27 weeks gestation. She was just over 4 pounds, and so fragile. She remained in NICU here in Oregon for three weeks before she was stable enough to come home. Luckily, she has retained no permanent damage resulting from her prematurity, however, I know that when it comes to preemie babies, it's all a crapshoot. I work for the Arc, an organization geared toward supporting people with disabilities. We have several people there who happened to be premature, and while there is no disability that is for certain caused by prematurity, I feel that the correlation should not be overlooked. I thank you for your book recommendation, as well as the one suggested in the comment section. I plan to read both authors, as well as possibly leave the book at work to be borrowed by others.