Seeking Advice for Raising a Child with Cloacal Exstrophy

Hello new friends.  I only just recently found this site and am very glad I did!!  I have a 2-year old born with Cloacal Exstrophy Sequence.  Any other men born with this defect? I'm looking to talk with people (boys) who are older and can give us input on how you have been handling life.  Thank you, in advance, for your support!!  -debbie

Gosh - that's a new one on me ..... I really hope you can find someone here who can help.



In the meantime, welcome!



Rach xx

Debbie, this is really rare and God, I bet you are one super mom that any child would be grateful to have. I don't know anyone with this condition and I am so sorry I can't help you. I will ask my surgeon when I go in if he knows of anyone to answer some of your questions. I sure hope someone on here knows something to help you understand what is in the future, but whatever is in your future sounds to me like a lot of understanding and love. I admire you and the thing is I would also do what you are doing and fight for my child. I truly know God is shining his love on you and your family as this is a remarkable story and a beautiful one. I am sorry you have to ever see any suffering but I know children are pretty cool about making moms feel like it's all OK. Don't give up and one day you will find the answers you are searching for and just every day you wake up to that beautiful baby the Lord has put in your hands to take care of, remember there is always a mom like me, who would give anything if the Good Lord would let me have my daughter back including what you are going through. Children are the greatest gift we ever receive and I never forget that in my life. I may not have met you or talked to you, but seeing the kindness in you only shows me how lucky I am to even be on this site and see the miracles with people and parents I have seen and heard. You will learn a lot as I did and I hope and pray I still do learn. I go in for a reconnect real soon and my doctors don't see any problems and still no hernia, my family would never let me do anything that could make life any harder for me. I am also very blessed to have a great family. I hope you all the happiness and peace life can give you as you deserve it and also a World's Greatest Mom's Award. I will keep you and your child in my prayers, also ignore me when I am going through my own things in life. I can be silly, but a dear friend is sick and it is killing me right now and for some reason I can't stop crying as she also touched me in a way very few people ever could. Love hurts and it is worth every bit of fighting and pain and heartbreak it brings, because most of all love brings the greatest joy and happiness. I am here if you ever want to talk, love in Christ's name, Jenny

Hi....only know a little about the condition your son has.  Just know it is a "hard row to hoe".   I can only guess how tough it has been on you to try to deal  with all of the challenges.  Not sure if there are any adults on here that have had this condition but I have seen a few parents with children that have ostomies on here as of late.  Perhaps you might be able to find some information through them.



You mentioned that your son might be able to have reconstructive surgery later on down the road.....wishing you all the best for a good outcome.



Best wishes for you and your son,



Shelia

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hi debbie you will be kept busy know doubt looking after your son , hope it does not bother him to much .  l had my urostomy done when l was about his age , it did not bother me,  also like your son my penis was not very well formed , at 10 yrs of age l had plastic surgery on my penis , so that was fun !! its a lot better now .  l am 56yrs old now , god help me , and not much trouble over lifetime ,yet .  l know your son has a lot more to go through, but the surgeons these day are fantastic .  wish you all the best . chat any time .   mike .

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How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

Thanks, all, for your replies!  Other than Ryan's method of going to the bathroom... he is alllllllll boy and alllll terrible two-sies!!  Tantrums and all.  

Mike!!!  Thanks -so very much-!!!!  for your post!  To read your reply and know you are now older... means so very much to me (and my husband!!)!  So... to read that Ryan is not alone in the world of ostomates is helpful.



I'd love to chat with you, Mike, (and anyone else in a similary situation as our perfect baby, Ryan)!  Please send me your phone number and a good time that we can call.  We live in Florida.  



Thanks, again, friends!!  -debbie

hi debbie , thanks for posting a reply.  not allowed to give phone no on site  l think , look on face   you might find me that way .  not much fun when your son is playing up , can remember that myself , just about !! will get better as he gets older .  at least now adays the pouches etc are a lot better , do you use a tape to keep flange and pouch on . if it possible would help may be even use a belt.  mike

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hi

Hi, KennY!!  Thank you so much for your reply!  I tried FB you, but there were several Kenny Moritz options and I didn't know which one was you.  What is your FB profile pic? I'd love to chat more easily on FB with you!  Mine is Debbie Episcopo... you will see a picture of 2 little girls and pumpkins.  I'm the little blonde (many many many years ago!!!!)!!!  Please FB me as I'd like to chat more easily and more personally!!!  Thanks, again, for your reply!!!!!!

Hi

hi debbie , long time since l wrote to you about ryan. how is he getting on at the moment ,is he ok .  look me up on facebook no trouble talk to you at weekend if you like , just let me know . say hi to ryan and your husband from me .  mike xx

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