Wednesday, August 7, 2013

Preemies and the Life After

Chances are you might have seen this article from the New York Times by now. I read it, and sat on it for a few because I really didn't know what to say. My mind when back to a few days ago when we had the honor of attending our first NICU reunion, and heard one of our own Neo's said something similar. Something to the effect of  "Sometimes the hardest part of my job is to save these tiny babies. Because when we do all that we do, we have no clue what kind of life we are saving them for. Many go on to a lifetime of severe disabilities, so to see two 26 weekers doing so well - it makes it a little easier."

Not too much more far fetched then what the NYT author had to say. BUT - the author also says parents lack the appropriate education in these situations and need to be better educated. And further seems to make it seem as if saving a child so premature is almost torturous and inhuman. She also mentions about using steroids to help the child come of the ventilator and that it can cause Cerebral Palsy, and how risky it can be. Yeah we had that same conversation about Addison, but guess what? BEING BORN PREMATURELY INCREASES THE RISK, not to mention many full term children have CP too! The data claiming the steroids "cause" CP is inconclusive, because there is no way to tell if a child would have developed CP without the steroids. So if we are talking education, she miss informed his patient's parents right there. It also makes me wonder why she chose such a profession if she disagrees with much of the treatment? To all of that I have many many thoughts. Some which I can't even put in to words.

Somewhere along my news feed today I saw a blog post from Life with Jack  in response to the NYT article that probably said it better then I ever could.

Is there truth to much of what the author is saying? Absolutely. Statistics don't lie, and parents do need to be well informed. Reality is that that conversation shouldn't happen just once. It should happen often throughout the care of the mom and later after the care of the preemie. Our hospital was good about doing NICU consults every week/stage so we knew what to expect should we deliver on this day or that day. But the very bottom line is that there is no sure way to know what the outcome will be. If you didn't know Blake or Addison's story - chances are you wouldn't guess they were preemies (aside from being a little tinier then their peers), that's even with Addison's very mild delays. And every day I am reminded that some of this could just be Addison and not a preemie thing we are just likely more aware and have been working on it because she was born early.

Please understand this - I am NOT in any way criticizing the parent who chooses not to sustain life in a child born at 26 weeks (or any gestational age). But I do want these parents to see what life with a 26 weeker (or two) is like. That's what this blog has been about. Sharing our experience. Sure we talk about lots of things here, but at that end of the day - raising awareness and knowledge will always be where my heart is. If we knew back then when I was on bedrest what we know now - you can bet your bottom dollar that we'd make the same choice. After all we were given the choice more then once about how to proceed with Addison. And you know what? Even with all she has been through and all the heartache I've felt as her mother, I cannot imagine my life without her and Blake. No way no how.

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