December 31, 2009 at 11:30 am Leave a comment

I wanted to write this happy blog today about how we are skiing and just enjoying being a “normal” family. And I am enjoying them and am so happy my boys are doing something “normal” families do. But my head is elsewhere. This woman who I have been emailing with for a while who lost a baby to ARPKD is now pregnant again and it looks like the baby has ARPKD. It is just so sad to me.  With her first pregnancy the 20 week ultrasound was “good” and then she didn’t have another one until 34 weeks where she had no fluid. I am not sure when she delivered but her first baby did not survive. She is pregnant again and again her 20 week ultrasound looked “good” but one at 24 weeks showed possible bright kidneys. She had another one this week at 26 weeks and her fluid is going down (but still within normal limits) and the kidneys still look bright and are getting bigger. I feel so horrible and helpless for her.  And I’m not sure her doctors know all there is to know about ARPKD nor have a lot of hope. At least from things she told me with her first pregnancy I am not so sure. I think they have convinced her that all babies with ARPKD will die or at least all of her babies with ARPKD will die.  She did not have a C-Section with her first pregnancy and she had no fluid and the baby’s kidneys were very large. The guru in the field often talks about how there are so many mutations of the gene and there is this one mutation that is almost always fatal but then every once in a while it’s not. And really most of the research they are doing with the disease at this point is not to cure the disease but how to get the more severe kids to be like the milder kids. The crazy thing with ARPKD is that every child presents in such a different manner, even within the same family.  I pray for this friend of mine that it will present in a different manner for this baby and that her second pregnancy will have a much better outcome then her first. I can only imagine the fear she must be feeling right now. It is not unknown to her anymore and now she knows what can possibly happen. When you have your first child with ARPKD you usually don’t know what can happen and probably have never heard of ARPKD. But when you had a baby die from ARPKD and are now pregnant with a second baby with ARPKD, I cannot even fathom the fear. So one of my New Year’s wishes will be for this friend of mine and her unborn baby with ARPKD.


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December 2009
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