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Epispadias, anyone?

Amanda - posted on 10/20/2009 ( 8 moms have responded )

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I have a 6-year-old son, Gabe, who was born with epispadias. He didn't have his foreskin removed at birth because of his anatomy. He, basically didn't have a urethra. His penis could be opened like a book and he would urinate from his belly. His bladder neck also sits too high and prevents the muscles in his bladder from stopping the flow of urine. He's had many scopes and ultrasounds. He's had 2 surgeries (the 1st lasted 8 hours) to create a urethra, repair chordee and fistulas. His penis looks fairly normal now, other than length. But, now we're battling incontinence. He had DEFLUX injections in Feb. We thought it worked, but no. He goes to see his surgeon in Dec. when we'll probably schedule a 2nd round of injections. I hope it works. If it doesn't, he's looking at bladder reconstruction. Anyway. That's Gabe's story. I'm not looking for advice or a shoulder to cry on. I just want to talk to another mom who knows what I'm talking about.

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Alisha - posted on 01/09/2013

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Hi. My name is Alisha. Im looking for people to talk to about episadias. I dont have a child with it, I have it. Im 19 looking to talk to someone, someone dealing with the same problems as me. My email is li.3sh@hotmail.com.

Sinead - posted on 11/02/2012

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Hi,



Our son is 8, we live in ireland he was born with epispadias. He had a repair at 18 mths. He has severe stress incontinience, and we have recently been refered to London. We are still reeling from the information given to us. Again the lack of information over the last 8 years and the misunderstanding of GPs etc has been tough. They are talking about bladder neck reconstruction and a sling technique and maybe Kelly's procedure.



Sinéad

Christina Anker - posted on 10/01/2012

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Hi

Live in Denmark and our son is 7 years old. He is borned with epispadias and got a Ransley procedure when he was 18 month. Now we have been suggest a kelly prodcedure. I fell so alone with all my questions, can´t find anyone to ask. My corncern is how will he looks after the kelly procedure, will his incontinent be better. Please share with me I you like.

All the best

Christina

Jodie - posted on 05/25/2012

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Hi Amanda,
I have a 5 going on 6 year old boy who was born with Episadias, we have been through the same as your little boy but jayden has had a bladder reconstruction and is now going in for his third bladder neck injection but is still incontinent we have seen some improvement but not complete dryness which hopefully we will see soon as it is starting to affect him not being able to stay dry.
Love to chat as their is not many people around that has to over come this problem

Amanda - posted on 07/07/2010

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Hi Lizzie! Dealing with es is definitely hard! Since my post, Gabe has had the 2nd DEFLUX injection. The same day as the procedure, while Gabe was in post-op, the surgeon told us that it was most likely not going to work and that we should start talking about bladder neck reconstruction. Gabe goes in for that surgery on Dec. 14. I think the most difficult thing to deal with is the lack of information and answers, the uncertainty. Well, that and the loneliness. I finally met, face-to-face a family dealing with this. It was amazing! Their son is only a year older than mine and they live 20 minutes away. It only took us 7 years to find another family! LOL. Anyway. I've met a few moms who are my "friends" on facebook. I'm sure they'd be willing to talk to you too. Also, the best site that I've found to get help, advice, information, etc. is www.heainfo.org. Check it out. I love it. Everyone on there is very nice and VERY honest. Feel free to friend me or message me when ever.

Lizzie - posted on 06/26/2010

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my 10 month old was also born with epispadias. He has has the repair since his birth but we were told that he may have to have a secondd surgery done on the muscle around his bladder in a couple of years. It is hard and there are not a lot of people around my area with children like this. so it is nice to find someone that you can talk to that understands.

Amanda - posted on 06/03/2010

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Hi Amanda! Gabe epispadias is either called "complete" or "penopubic". He doesn't have any of the exstrophy, thank God, or urinary reflux. Can you send me some details on the Kelly procedure? I'm not sure what it is.

As far as your son still being in pull-ups, don't worry about it. Gabe is 7 now and wears Goodnights (the nighttime version) because he's so big!. I can't believe he weighs almost 70 pounds already! He's done with school for the summer now, but about a month ago I added to his Individualized Education Plan (IEP). The school was giving us a hard time about letting him have some privacy during bathroom breaks. All the boys head to the bathroom at the same time. Gabe stopped using the toilet all together because he didn't want the other boys to see his pull up or penis. Now, because of the IEP, the school has to provide him a private restroom where he can change his pullup atleast once a day. It's helped a lot.

As far as the behavior goes, maybe he's frustrated. Epispadias can have a big impact on behavior. I don't think any specific condition is linked to it other than depression. But, Gabe's doctors have recommended counseling for him, especially after he has the bladder neck reconstruction. I think that whether or not he has some mental issue, he'll need some kind of therapy simply because of everything epispadias brings with it.

Feel free to send me a message about anything. I'm totally not afraid to share.

Amanda - posted on 06/03/2010

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Hi Amanda 1st ((hugs))) hun its so hard to find people with this condition to talk to as its so rare. And have never meet another boy with epispadias.

we already talk on FB and you have been a great help for us but here's a bit about Owen who's 4 and a half yr old and was born with epispadias. When he was born he looked like he had a hernia but on closer look it was epispadias.He had surgery back in Feb 2010 and the surgeon did both a bladder reconstruction using the Kelly's procedure and he made Owen a urethra and made his penis a tube as like your son his was in half. Owens operation took 5 and a half hours. We are still in the early days of weather he will now be continent but been told it will take a good few years for him to be dry or at least out of pull ups. He now has a tummy muscle not a bladder one so he will have to learn how to use it as he wont get the same feeling to need to pee as other boys. At the moment we are having behavior problems in nursery (also before his op) and they and us are wondering if there are any such problems that may be linked to epispadias or weather its a whole new problem. Have had someone say he has signs of asperger's syndrome but not yet had it confirmed. We are having people observe him in nursery and hope they can find out whats up as we are trying to get Owen a statement of education as he need 1-1 in class and be going fall time school in Sep also he will still be in pull ups so will need help changing through the day was really hoping he would be out of nappies/pull ups by school but thats just not going to happen now :'( I have been told hes very bright so some times wonder if hes bored in nursery but then I have also witnessed his "meltdown" Don't know if you have heard of any other problems linked to this condition. Over here in the UK most people are clueless including most GPs and I'm sure they think I'm going mad lol Can I ask was you given a "type" of epispadias if that makes sense :oS Anyway its nice but sad to know our family are not alone.

Take care xxx

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