Wednesday, August 7, 2013

Of "End of Life, at Birth" NYT OpEd by Dr. April Dworetz

I know what you're thinking.  "Goodness, Maikata. Can't you leave well-enough alone?"

That's the problem with reading commentaries to New York Times OpEds right before bed time.

It sticks with you all night, and then in the morning you find you CAN'T leave well-enough alone.

The worst are the comments, really. Lots of people talking about how babies like mine shouldn't be hooked to tubes because it's mean, invasive, selfish and done by optimistic but not realistic parents. You know, the irony of it being, they say, that if God had had his way and medicine hadn't intervened, the baby wouldn't be here.

That seems like a strange God, not wanting us to use the talents we're given to sustain our lives. By the same argument, shouldn't be here. I should have either bled out and died of exhaustion delivering my second child, or died of septic shock with my third. Is my child more unnatural than me, with his ability to live with the aid of modern medicine? I know I'm not the only mom tired of feeling like I must justify my son's existence.

But then there's the OpEd writer's argument. She states that the odds are bleak, that they should be fully explained to parents. I agree with all that. I also acknowledge that there were points where we thought we'd have to say goodbye. Like after his bowels perforated, when we weren't sure how much he had left in him that would work, and we weren't sure if his life could be sustained long-term. So, yes, I get where she's coming from.

But her data makes it sound more grim than it is. Ninety-two percent chance of death or moderate to severe disability. That's an awful lot thrown into 92%. Odds of death are a little greater than 50%, according to my neonatologist. And disabilities range from nearsightedness and asthma (mild - I don't think she includes this in her data) or speech/eating delays and motor issues (moderate),  to completely non-verbal and non-ambulatory (severe). That's a big range. So, if you're going to inform parents, you need to do it right -- not lumping all that together in a 92% category.

Also, her data is old.  Good preemie studies with large sample sets haven't been done in a decade or more to my knowledge. Okay, I shouldn't say that they haven't been done. It's just that the they are still being done and aren't yet complete. A nation-wide, multi-year longitudinal study is currently underway to give us new data, but it's still only underway. JAM is a part of the study - this is how we know about it.

So, yes, give parents data, but explain that it's incomplete.  Detail it, don't shade it to scare. We can handle the truth all the better if the truth is accurate. And are you doing a poor job explaining?  I'm not sure you are. I had a great pre-birth consult. So have many micro-preemie parents I've "met" (virtually met) since. We know the odds. We make the choice. Most of us don't regret it, even after all the difficulties.

You must also (and here I think about the commentators more than the OpEd writer) see the bigger picture. We are so grateful that we the parents decided. We, the ones who happily and some days begrudgingly bring our micro preemie one year old to PT (physical therapy) and sometimes OT (occupational therapy) appointments. We know the cost goes past the NICU. We search for scholarships and secondary insurance because insurance companies only cover so far, and we don't know how else to pay for what our kids need so that we can fix preemie issues early on, while they're young and malleable.

We get that it's costly. Do we have to defend that cost with raw data of productivity though? (Dagger eyes to the insensitive commentators.) I mean, my son is ONLY one. Does he have to prove that he'll become a neurophysists before you'll agree that he should be treated?  Many many of them DO get on track before two. And those who don't become perfect babies or toddlers, what then? Let's be complete and start judging whether all adults are perfect. Let's place a value on everyone's life, especially right before any major operation is undertaken. [Sorry, over the top. I'm sure later I'll regret typing that, but a bit of anger just flared. Really, one SHOULDN'T read stupid commentators late at night.]

Okay, just so I don't completely lose the point with my brush of anger, let's sum it up. Yes, we get it. We bear the cost. But we also see broader than those initial costs. It's more than the heel pricks in the NICU. Beyond that, if parents are to be fully informed, explain that the data is the best you have, and that things may have changed in recent years as technology improves. Look with great anticipation to new data, to see what the new "average" micropreemie's life looks like. It may be better than years past.

I think I'm done for now.  Jonathan wants to play.

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