Not-So-Absolutely Fatal?

Bilateral renal agenesis is not, in itself, guaranteed fatal.

This was one of the interesting statements my specialist made the other day at my latest appointment.

I asked her, point blank, if she had ever personally seen any babies born without kidneys to actually have sufficient lung development, survive, and go on to receive dialysis/kidney transplants.  She seemed to dodge the question at first (probably not wanting to give us any numbers or statistics, since she’s been pretty clear there are no statistics–it’s all just dependent on a huge list of factors that are impossible to compute).  I figured that meant 0.  I’ve been feeling for a while that her dodging anecdotes, statistics, and case studies was an admission that they’d never done it before, but perhaps they could in the future.

So I asked the question again, and she said, “Well, we don’t do it every day… and I could say that 5 or 10 years ago, we would definitely be talking about it differently, but in those years, we have seen babies survive.”

This is something that no one talks about, apparently.  In all of my Internet searching, I have only found, “Bilateral renal agenesis is fatal,” and the like.  Plenty of news articles have claimed that Jaime Herrera-Beutler’s baby is the “first” to have ever survived without kidneys.  The specialist said that that was certainly not true, though she admitted that her procedure was experimental, so she thinks it may be the first to survive with the experimental procedure Herrera-Beutler underwent.  I asked if it had something to do with Herrera-Beutler being a politician, why such a thing had never been reported on before.  The specialist said that was most likely since it’s been done before.

On the one hand, this is encouraging.  On the other, I have been almost uncontrollably angry ever since my appointment.

I am angry because of the dozens of blogs of I have read by this point of women who were told their babies could not survive under any circumstance, that dialysis on even a full-term newborn is “impossible,” and that their best bets were to deliver early (28-32 weeks) to avoid stillbirth.  The last point seems to be somewhat true–a live birth is better earlier since cord compression and death can occur at any time (something we are constantly worried about), but by being born so early, the baby’s lungs will likely not be developed enough for survival (if that were possible) and dialysis would not be possible (the doctor at our state’s Children’s Hospital says that 5 lbs is the minimum, though Herrera-Beutler was able to find a doctor at Stanford that took her very tiny baby).

I am also angry because they spent weeks 20-25 telling us that our baby would die and that they would do nothing to help it.

“We don’t save these babies,” one of the doctors on the specialist team explained to us.  “We don’t intubate, we don’t resuscitate.”

So why does the head of the same team of specialists say something so different now if they’ve been doing this for 5-10 years?  Why wait over 5 weeks to even let us know there could be any hope?

We’re still aware that the odds are very much against our baby.  We plan on burying our first child in a month, because there is no way of knowing if sufficient lung development happened and if it can support itself until the day happens.  But there is just a tiny bit of hope.  That’s more than we were given initially, and more than other women have been given.  

Why does no one talk about this if babies without kidneys can, on rare occasions, actually survive?

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