I was 19 weeks pregnant and I found out through a routine scan. They said there was something just not right about the shape of his head and then further investigation proved spina bifida.

When he was born I had a caesarean and the doctor showed us he had a big blister on his back where the opening was and the doctor showed us him straight away and we thought that's fine, he's alive, he's breathing, he's fine. You know, we were absolutely elated. And then it wasn't until a couple of hours later and they said he needed surgery. At 12 hours old I think it was when he had his first surgery. I was in Sunderland hospital and then transferred Brandon to the RVI at Newcastle so I wasn't with him before he went down for his surgery. I was transferred afterwards when he came out. It was absolutely terrible. I didn't know what they were doing. You know I didn't know whether he was going to be alright with him being so small. No it was a really heart wrenching time.

As a baby it was just our baby, there was no extra looking after or caring. We did have to make sure he had his physio and move his limbs, but that was just part of when we bathed him and when we changed him and we got him ready. We just made it part of his daily routine, so we never had to go out of our way to spend half an hour physio and things like that, it was just plain sailing for the first year. Hospital appointments. That was the main upheaval. He was in and out of hospital for the first year. Well he had his back closed just after he was born, very soon after. A couple of weeks later he had a BP shunt inserted. Then a few weeks after that because of the pressure of the fluid or something he had two hydroseals on his testicles. They had to be removed once, and then a couple of weeks later another one. Then his shunt, the tube into his shunt snapped, he had to go in and have that replaced. So it was just that first year was scary.