Barney's story

Constant bladder problems made every day difficult for Barney and his family, until a diagnosis led to self-catheterisation. Here, Mum Holly explains how ERIC was there to help and reassure.

Barney and his mum Holly

From a young age, it was clear Barney had problems with his bladder. ‘When I was little, I couldn’t stop weeing,’ Barney said. ‘It was terrible.’

Holly said: ‘No days were particularly easy. He would have multiple accidents each day and because his bladder was so full, it was impacting his bowel, so there would be poo accidents too.’

Outings were made difficult as they always had to carry around extra clothes and it was tricky getting into cubicles big enough to facilitate changing Barney. Staying at friends’ and family’s houses wasn’t easy, either. Barney said: ‘I was embarrassed at always being soggy or smelly at other people’s houses.’

I felt totally lost

Over the years, Barney had lots of tests before receiving a diagnosis, which led to self-catheterisation.

Holly said: ‘Barney had a nuclear scan, an MRI scan, two cystoscopies under general anaesthetic and Urodynamic testing.

'Then he was diagnosed with Detrusor-Sphincter Dysynergia. It means that his bladder holds much more wee than a child of his age should, but it never fully empties.’

Barney said: ‘I had to have some operations which I didn’t enjoy at all. Mummy was really sad and did quite a lot of crying. She thought I didn’t know.’

‘I felt totally lost, to be honest,’ Holly said. ‘It had been so alienating going through the tests, having days off work and so on. I was trying hard to be a calm mummy and super teacher – it was totally exhausting and I felt like I had nowhere to turn.

'No-one I knew had experienced these things as a parent. I felt mum-guilt in a major way – I thought, why hadn’t I spoken to anyone sooner?’

I was trying hard to be a calm mummy and super teacher – it was totally exhausting and I felt like I had nowhere to turn.

ERIC made the difference

Yet throughout the family’s struggles, Holly felt she had a place to turn that really helped – and that was ERIC.

‘Our health visitor had pointed me towards ERIC when we’d first had potty training issues, so I gravitated back there quite a bit over the years. When it became clear that Barney’s problems were more than just potty training gone wrong, and he started seeing consultants and having tests, I went back to ERIC’s website to read stuff!’

‘ERIC made the difference,’ Holly said. ‘Through ERIC’s online resourcesI could see that Barney wasn’t the only one. I felt less alone.’

Barney said: ‘Mum said that the information she found through ERIC helped her to realise that I wasn’t the only child who had wee problems, and she met some other mummies who have sons with the same problem. It’s made her less scared, I think.’

Barney wants to be a mentor for other children

Barney was taught to self-catheterise, which he now does five times a day. At first, it made him nervous, but he says: ‘When I read about other people having to do catheters and the fact that they were okay, it helped me feel more confident.

‘My granny got me the watch which helps me remember when I need to cath.’

Now, aged 9, Barney is doing incredibly well. Holly says: ‘Honestly, he is amazing. He has blown us away with his maturity and the way that he has coped with this change in the norm.’

Recent tests show that Barney’s condition is improving.

‘I think it’s vital that other children of his age know that kids sometimes have to catheterise,’ Holly said. ‘He spent a good while thinking he was the only one! He wants to be a mentor for other children so they aren’t scared.’

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