Thursday, May 21, 2015

Saving 22 Weekers

The micro preemie world is small, so when an article comes out in the New York Times about us, we take notice. In short, the Times reported on a major study, conducted by the National Institute of Child Health and Human Development, which showed that if treated, or given life-saving care such as ventilation (instead of just "comfort care"), a baby may be able to survive at 22 weeks. Much of the article focused on the long-term "outcomes" of micro preemies, discussing in particular the findings for 22 and 23 weekers, as well as the implications of this promising research on the abortion debate and overall medical standards of viability.

Now, this whole discussion is not news to us. Chances are, if you have a micro preemie or have been around here for any length of time, you may have seen or heard about a living, breathing 22 weeker. Some of you may have been in a NICU with a 22 weeker or may even be blessed to parent one. You know Jack's story of being born at 23 weeks. I mention his gestation at birth quite often, especially in relation to how thankful we are that our hospital chose life-saving care (some don't at that gestation). Long story, this is NOT a new discussion. It is something we preemie parents think about a lot.

Like pretty much every other person who cares about this issue, I posted a link to the article on our FB page. I quoted a doctor in the article who said "I guess we would say that these babies deserve a chance" with my own commentary, "so glad to see this study and the dialogue changing for our earliest survivors."

And then I nervously waited.

But not for what you may think. No, I wasn't waiting for someone to disagree with me. Most of the time, people don't use our personal page for a debate on viability. It's a discussion that has occurred elsewhere, though, and there are people out there who think Jack shouldn't have been saved. I've seen online forums where he was discussed as having "a lot of problems" and the question posed "do you think they should have resuscitated him?"

But I wasn't waiting for that discussion, because this is a group of micro preemie lovers. No, I was waiting for something much more common. Honestly, I was waiting for the "perfect" comment, for someone to write "well of course 22 weekers should be saved! My child is the best example of this. My child is totally perfect, like a normal child now! They don't have any problems! You'd never know they were a preemie."

This happens quite often and don't get me wrong, everyone's story is important to tell. I love success stories. Some are quite miraculous and I know it provides a lot of hope for those scared silly in the NICU. But "perfect" outcomes are not the reality for most. And I have to wonder if the "perfect" comments are showing us just a glimpse of our tendency to place greater value on those who society thinks are whole, healthy, smart, or beautiful?

One of the main things I hope to get across by sharing Jack's story is that yes, his life is pretty amazing. Yes, he struggles. Although he is perfect to me, he doesn't have the storybook perfect micro preemie outcome. And you know what? That's OK, because he was still worth saving. Most importantly, his worth is not based on any outcome, but is innate to his very being. His worth doesn't come from my own ideas about him, or about how he should or shouldn't be, or even by any measure of how society views him.

All this to say, and in my most humble opinion aided by the hundreds of micro preemie stories I know, attempting to save 22 weekers should not depend on their likelihood of a perfect outcome. We should attempt saving because they are human and deserve a chance.

If the grand litmus test is no disability, no challenges, no risk, then very few will ever be saved. Is that the kind of cut throat world we want?

My preemie mama friend, Molli, said it best. "Children who are not "perfect" are just as worthy and just as loved. At what point do we realize as a society that disability does not equal poor quality of life? At what point do we stop saying "I don't care if it's a boy of a girl, as long as it's healthy?" I love my babies, warts and all, as much as the next person. They are worth as much as any other children. They are beautiful and funny and imperfect and amazing and I wouldn't have it any other way."

Amen, sister.

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