January 22, 2011 at 6:33 pm 1 comment

I am in the process of helping to write an article for a local parenting magazine about my life with ARPKD. A wonderful PR person who volunteers with the PKD Foundation is helping me write it and helped me decide that the main focus of the article should be about having HOPE with this disease. I am so happy with how the article is coming along. I will post it here once it is published.

The big thing I talked about in the article is allowing parents who are pregnant with a baby suspected of having ARPKD to have enough information to make their own informed decisions. It is so frustrating to me when doctors give a grim prognosis and tell the parents there is no hope for survival so do not even try to save the baby. If a parent is pregnant with an ARPKD baby and they decide to not use lifesaving measures then that is their decision and I respect that. What I don’t understand is how doctors don’t give them all of the information they might need to make that decision and especially when doctors have no HOPE. I know the statistics. I know 30% of babies die at birth from ARPKD. But I also know that doctors don’t really know what the outcome will be. Like I have said before if Gabe had not been put onto a ventilator he would have died. I don’t know what I would have done if the doctors told me there was no hope for survival. I don’t know what kind of decisions I would have made and honestly I’m glad I didn’t have to make any of those decisions. I wish no parent did. I wish all doctors gave ARPKD babies the hope they need.

I got an email today from yet another pregnant mom who is excepting an ARPKD baby and was given no hope and was told to hold the baby and love her until she dies. Again if those parents decide to not use lifesaving measures then I respect their decision, but not if the doctors don’t give them all of their options and some sort of hope. I emailed her but like I wrote in another post I worry I give too much hope. I actually said that in the email.

So right now I am talking to three pregnant moms and one whose son was born a few weeks ago and is in the NICU. I really hope these babies are as lucky as Gabe has been with ARPKD. And I hope their parents hang in there.


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1 Comment Add your own

  • 1. Naomi warburton  |  January 23, 2011 at 3:53 pm

    Did you see the renal letter I received? It’s on my blog. My nephrologist seemed positive about the lungs…it is so rare for a doctor to be hopeful but based in these other women’s experience, I don’t know if I should believe him. Four doctors have told me the lungs look a normal size…if they are giving me hope and they are doctors, I don’t understand these other doctors who are giving no hope or mine are wrong.


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