NHM Reader Post: Bladder exstrophy and epispadius

Thank you very much to the Mum who has shared some of her, her son’s and her families journey today.

It takes great courage to share something like this and she’s done a brilliant job.

Children With Additional Needs – bladder exstrophy and epispadius

If you met our son you would not know there is anything different about him, he is a fun loving, sport mad, confident 6 year old. However, he was born with a rare birth defect – bladder exstrophy and epispadius – basically his bladder was outside his body.

We ‘luckily’ found out during a routine 20 weeks scan that there was something not quite right, some specialist scans later our unborn baby had been diagnosed with a rare birth defect. Although it was difficult, knowing before birth made it easier for us to deal with, find the right support groups and get ourselves prepared.

When he was born within 12 hours he was taken to Great Ormond St Hospital for his first operation. This was particularly difficult for me as I could not be discharged from Basingstoke, due to difficulties during the birth and he underwent the surgery at 1 day old without me being there.

He underwent his second surgery at 23 months. This was harder to deal with for different reasons, he was now older, understood more about what was going on and didn’t like it when we left his room even for a few minutes.

As a baby there were few differences between him and his friends, everyone wore nappies! As time has gone on the differences are much more apparent. He is urinary incontinent and still wears pull ups. He deals with this really well and manages himself at school and when away from home.

It is hard for him as he is desperate to be like everyone else but as yet he has unable to achieve continence. He is fully aware of his differences and we hope that the challenges he faces over time get easier for him and eventually we will achieve dryness.

Treatment and prognosis for each child with this condition is different which makes it difficult for us to know what the future prognosis might be. We have regular trips to the hospital for biofeedback sessions (practice using the pelvic floor muscles) and further operations may still have to take place. Worst case scenario would be him needing a catheter and although this is not the ideal having seen children deal with this sometimes it seems the easier option.

We try on a daily basis to get him to do exercises and remind him to use the toilet but the bladder capacity and pelvic floor muscles are not developed enough.

We make sure that he has the same opportunities as everyone else and his condition should not hold him back from doing anything. The routine of school is good and he remembers to change, but as soon as there is a school trip or sports event we worry if he will remember and if he has all the supplies he needs.

Finding people that relate to our situation is hard as this condition is rare (approx. 1 in 70,000), but through the hospital and social media there are people we can talk to. Our support from hospitals, school, friends and family has been amazing, other children have been curious about why he is still wearing pull ups but no teasing has happened yet – this is something else we worry about as he gets older.

Given the opportunity we would love him to be ‘normal’, but his condition will not define who he is but hopefully make him an even stronger character than he already is.

P.S. Please remember that not all disabilities are visible.

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