A really hard thing

July 8, 2008 at 1:06 am Leave a comment

I did a really hard thing tonight. I talked on the phone to this man whose wife is 25 weeks pregnant with a baby who they suspect has ARPKD. The wife has no amniotic fluid and the doctors are giving the baby a 0% chance of survival. Wow. I cannot even imagine the feeling. But I am also so frustrated that the doctors are not even trying. Every baby with ARPKD is so different. That is one of the problems with this disease. Every child presents in such a different manner and no 2 are exactly alike.  There are stories of babies who had no amniotic fluid who did survive and stories of those with amniotic fluid who didn’t survive. There are so many stories of doctors who said the baby would never survive but did.  Too many stories to even talk about. 

I really hope I helped this man and his wife. I really hope I gave them the tiniest bit of hope and at least let him know there are people out there who do care. I know my situation is different. My 2 boys with ARPKD are alive. But in some small way I do know a tiny piece of what he is feeling. I remember that one long night on March 14th, 2006, before Gabe was born when I lie awake all night worrying.  And then the next night when I watched them wheel Gabe away in his incubator to go to the other hospital not knowing if I would ever see him again. So, I do know a small part of their fear. I hope I helped.

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