Epispadias, anyone?

Amanda - posted on 10/20/2009 ( 18 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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Nazanin - posted on 08/06/2013

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Hello everyone, I just found this website and hope to be of any help.

We have a 6 year old daughter born with Epispadias. We live in the Netharlands. After visiting many hospitals here in the Netherlands, my ex husband went on internet and did a lot of research on Epispadias and there was always one doctor's name coming up and that was dr. John Gearhart from the Johns Hopkins hospital in Baltimore. We visited him in the U.S. when our daughter was one year old. He is one of the best pediatric urologists in the world with a lot of knowledge and experience with bladder extrophy and epispadias.

Our daughter had her first surgery, epispadias repair, when she was 15 months old in the Netherlands but from then we were visiting dr. Gearhart every year to do cystoscopy so he could see whether our daughter's bladder was growing well. He had told us that that is the most important thing for this children as the next surgery for continence is bladder neck reconstruction. To be able to do this surgery, the bladder must have enought capacity of at least 150 cc. If the bladder does not grow enough then this surgery can't be done and other meausres have to be taken.
Another important thing is that the child has to be mentally ready to go through the bladder neck reconstruction because the continance training is a very big challenge and very hard so the child must be able to go through it willingly.

Fortunately our daughet's bladder was growing well and this year, on May 8th 2013, she had the bladder neck reconstruction done by dr. Gearhart at the Johns Hopkins. For a whole year I prepared our daughter mentally for this surgery and the whole journey of recovery and training and even took her to see a psychologist every week. If our daughter would have not been ready or the psychologist at the Johns Hopkins would have felt that she is not ready then they would have postponed the surgery for another year. If you do the surgery without the child being ready then it will be one fiasco.

My daughter and I stayed in Baltimore for 11 and a half weeks. Now we are back in the Netherlands since 2 weeks and she is doing very well. The training will still continue for another year or more depending on how she will do but the chances our high that she will be dry.

It was the best decision in our lives to take our daughter to dr. Gearhart! He and his team are the best! I will always be grateful to them! Those 11 ½ weeks were very hard and a very big challenge but worth everything! Dr. Gearhart has changed so many children's lives!

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Bajeerao - posted on 05/13/2014

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HI,everyone, iam Bajeerao,lived in Mauritius,i have Epispadias n incontinence of urine,i am 46 years old.it is not easy to live with this handicap but you have to live with, if anyone want to know more how lives is with this handicap you are most welcomes my brothers n sisters, My email,sharmsuj@gmail.com

Dianne - posted on 04/29/2014

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I'm a new mother and this is all so very helpful to me. My 10 month old son had hyposoadia a week ago. He was fine walking,dancing,playing the same day. I was so relived, however yesterday the bandages came off and now he seems to be in a lot of pain. Screaming grabbing at himself when I change his diaper. I'm also concerned because his penis looks disfigured and ripped apart. His surgeon keeps reassuring me that this is normal and the swelling will go down and it will look like a normal penis.
He goes next Monday to have the catheter taken out. I'm afraid that also is going to be very painful for my poor boy.
Has anyone had a similar situation?

V K - posted on 04/14/2014

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First of all I would like to thank you ma'am for sharing such important information. I am an Indian and my daughter aged 17 years is having the similar problem. She had undergone a corrective surgery at the age of 9 months and her bladder capacity has grown more than 200 ml but the problem of incontenence remains. Can you please share details of contact no and approximate expenditure involved. I would be highly grateful. Thans and regards.

Starla - posted on 03/05/2014

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Hi, I'm a very concerned mom. I have a son (19) that was born with epispadias and I am at a lost for how to help him cope. I looking for some kind of support group. Somewhere we can both connect to for a better understanding of this congenital anomaly. Please help us! He is starting to act to say things like he hates woman and I know it's directly related to his situation.

Nadine - posted on 11/01/2013

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Do you know if there is a place where we can get reviews on doctors? We have been seeing a doctor in Dallas, but wouldn't be opposed to getting another opinion from some highly rated doctors.

Ana - posted on 10/26/2013

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Hy, My daughter Dora is 20 months old and has ES without bladder exstrophy but has VUR 2. We are from Croatia, doctors from here have no experience with the operations of female epispadias.
Does anyone can recommend a good surgeon for an operation in the European Union.
Please...
hrvojebulovic@gmail.com

Mehnaz - posted on 08/23/2013

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I think my son had the almost identical condition as yours. He is supposed to be having the mitrofanoff next week. I just do not want this surgery and thought about going to Hopkins, but it seems that maybe they would do the same in his situation.

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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