Stillbirth and Baby Loss - ARPKD Baby loss

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ARPKD Baby loss

Printed From: OHbaby!
Category: Support
Forum Name: Stillbirth and Baby Loss
Forum Description: A place to support each other and share thoughts and memories after a stillbirt or the loss of a baby.
URL: https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=43978
Printed Date: 28 April 2024 at 3:34pm
Software Version: Web Wiz Forums 12.05 - http://www.webwizforums.com

Topic: ARPKD Baby loss

Posted By: RaraMoo
Subject: ARPKD Baby loss
Date Posted: 01 April 2014 at 8:35pm

Hi There,
I'm currently searching for mums that have had &/or lost babies due to ARPKD in NZ.
This is a very rare disease & from my research I believe that less than 5 babies die from his disease in NZ each year & my son is one of those babies. Since this is such a rare disease there is very limited information on it in NZ & I haven't been able to find anyone from NZ that has had to deal with this disease.
If anyone has dealt with this disease I would love to hear from them.
Thanks