Bladder exstrophy

Ashley - posted on 05/10/2012 ( 2 moms have responded )

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I am currently 13 weeks pregnant and learned from last u/s that the baby has bladder exstrophy,possible developemental delay to left leg,and the heart is lower in chest due to bladder not being there to "hold everything else up" the dr said that the spine looks good, and no sign of spinabifida, so far but it's hard to tell since it's still so early, i go back in three weeks for another u/s and a possible amnio,just depending on how everything looks... i am desperate to find other mom's going through/or that have went through similar situations like ours and any words of encouragement/advice would greatly be appreciated! Thank you in advance :)

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Shannon - posted on 10/23/2012

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Hi Ashley,



I hope all is well with you and baby? I am a mom of a four year old little girl who was born with classic exstrophy, we didnt' know until she was born so it was really hard at first and having not know anything about it. My daughter had first surgery to put bladder back in at a few days old and stayed in NICU for 13 days. We had many concerns as I know you do also. I can tell you each child is different in these rare cases, my daughter after the long road of recovery and finding the right doctor to treat her go easier over time and we are so thankful, After first surgery I noticed when she was attempting to crawl she would cry like in pain so wouldn't move around so she scooted on her butt and when would stand she did same thing so we ended up doing physical therapy which helped her alot and now seeing her you wouldn't think she went through all she did but it gets easier I guess you can say after surgery. Stay strong and trust your motherly gut about things always ask questions and find out all you can learn about your childs condition so you can better help them and avocate for you child for they cant' speak.. Sorry so long. I pray all is well and check out the group on facebook for bladder exstrophy. email me anytime u should want to chat shannon.rbrtson@yahoo.com

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