Message from a mum with a son who has Epispadius

No one story is the same. Some opted for bladder closure straight away, some just accepted being wet and some like us have tried several different routes with the surgery to find the Holy grail solution of being dry but continent. Our son reached the end of his contentment and it was him who drove the final decision for closure earlier this summer. Time will tell if it has worked but early signs are promising. He will catheterise for life now which is a huge life changing decision. 

So, no help groups that I've found. We initially found it hard to tell anyone about it but then did a huge amount of fundraising for biofeedback equipment in Scotland as we were travelling 3days/month to London and it was taking its toll on our young family (as well as using up all our grandparenting favours!). That's how we came across Kidney Kids Scotland and the lovely Sheena Dunmore and they supported us through the campaign and in getting the equipment placed in our local hospitals. 

We didn't go into any health specifics during our campaign, just kept it very general, as we have tried hard to retain as much of our son's privacy as possible. To this day, most folk think it is kidney-related due to Kidney Kids Scotland. He has now chosen to share with his closest friends and they've been a huge support. We have moved frequently so finding friends he can trust has been a huge thing for him. We've never treated him differently to our other children and he really has adjusted remarkably well. I'm in awe of how he copes. 


Things I wish I'd known, or someone had told me, in no particular order:


- NHS provide products like pull-ups and pads after a certain age that they'd expect another child to be potty trained. I only found this out after he'd turned 6! Ask your health visitor to refer you to the continence service once you know whether he can hold on at all. Potty training is counterintuitive with this condition needing pull ups but trying to get poos in a potty. 


- At the time I needed financial help most, traveling up and down to London monthly for treatment, a visiting community paediatric nurse from local hospital suggested trying for Carers Allowance. We secured that for about 5 pivotal years, so may be worth looking into. It's a dreadful application process and I shed many tears writing down the reality of what we were dealing with daily. I always try to be upbeat, but this form makes you talk about the worst of days /nights. 


- there are products you can try such as pyjamas that have built in padding, and small bed mats to save so much washing. helpful. 


Cotton bed mats were fab. And we also have a couple of these:


Washable so much better than wrinkly “Drynights” ones. Continence charities as well as Kidney Kids Scotland can help with cost of kitting yourselves out.


The absorbent pants didn't work for us. Too smelly, inconvenient to change. We used throw-way pads in normal pants. Each health board have different products, so can be a minefield as to what they will provide. 

-it's a long journey. The surgeries are very painful for our son as his bladder is very sensitive so spasms a lot. Buscopan is a drug not cleared for paediatric use in UK, but after a lot of searching /trying alternatives it was suggested it might work 6 days post-surgery. It was amazing and now used more widely. Not sure down to what age -  all bladders behave differently. 


- people are very supportive when they find out. It took me ages to trust in folk other than immediate family and to stop blaming myself.


- other kids aren't as mean as you fear (mostly). 


- I gave him a lego creator set plastic box in his schoolbag to keep pads in. I adapted school trousers to have a secret hidden pocket inside for a pad when he went up to senior school in case he couldn't take school bag to loo during class. He'd then replenish at break time. The “patented” hidden pocket can be shared on request.

- after Kelly bladder neck surgery at age 5 he went into his preschool with all his tubes while recuperating and gave a talk all about his experience. The kids were amazing.


Please do not look at stories on the Web. Steering away from them was best advice GOSH gave me.

Ask your consultant. If possible try to sign up for Psych services through GOSH. They can be good and useful sessions.