Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Monday, June 13, 2011

Just thoughts

I was talking to a few of the Hydrocephalus moms online ... and they had a really great point!  Here are some of the things we often ask doctors in the beginning because we just want answers:
Will she walk?
Will she talk?
Will she eat normally?
Will she be delayed at all in learning?
Will she have seizures?
Will she be delayed in any motor skills?
Are there any motor skills she will not ever be able to do?
Will she have complications?
Will she need shunt revisions?
Will she need additional surgeries?
How long will she be in the NICU?

And you know what the doctors answer is to EVERY one of these questions? I DON'T KNOW.

Fair enough, as prognosis is a total toss up.

But, then, we ask the doctors the following question:

Will she be a "normal" kid at some point or have a quality life?

And you know what the doctors say? No.

Ok, now I may just not be connecting dots here.. but.. if the answers to all my questions about Meagan's future life are "I don't know" .... and the answer about her life in general is that it will be "awful" .... how does that make any sense?? How can they be SURE her life will be sooo terrible.. but they cannot definitively answer ANY of my above detailed questions?

The logic just doesn't follow.

And HERE is where I have found the sadness in Meagan's diagnosis.  Doctors claim to know these children's lives will be just awful, but they don't even know one thing about their prognosis in any area of their future lives. The logic just doesn't follow - it doesn't make sense. What it tells me is  that, as parents, we tend to digest information and then move forward with how to best provide for our kids, whether they end up "normal" or not... the doctors know as much as we do about prognosis - NOTHING - but choose to extend themselves to say that our children's lives will be awful.  Honestly, this is really overstepping their bounds - they choose to perpetuate the absolute negative.. based on NO evidence. Hydro is such a toss up - there's no way they can tell any parents WHAT their child's life will be like.

So, I think the doctors should just say the truth - when we ask about her life ever being "normal" or having quality.. they should just say "I DON'T KNOW" instead of possibly endangering the child's life by being "so sure" they won't be able to do anything once they are here.

All this said, I don't want anyone to think I perceive the doctors' information as useless. Of course not.  They provide valuable medical information to us, and, provide care for these children after they are born that is life saving.  All I'm saying is, when it comes to predictions, that's where the advice should stop.  We should appreciate the medical information they provide, but then realize that they, like us, really don't  know what is in store for our kids, so we should then just take a day at a time. Let the medical information help us  - but be cautious to extend that to any sort of "doomsday" future ... let us be that ray of hope for our children and just keep fighting for what's best. 

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