Mother: He's not paralysed. Spina bifida is just really at the base of his spine, so we thought he was going to be paralysed but he's not paralysed. But when he was born his feet were actually stuck on his legs and they said this might not have been due to his spina bifida but it might have just happened anyway. But that's the main concern - his feet other than anything else. At the moment he still can't walk, but he is taking a few steps now.

Father: He's got bowel and bladder problems which we think is going to take some time to sort out. Like I say we're not sure how long that'll take, but the main thing at the minute is his walking. He should be up on his feet now and he's not.

Father: About ten seconds after he was born. Andrea had a caesarian and we knew there was something wrong as soon as he came out. I mean he cried and everything when he came out and there was a look on the surgeon and the nurse's faces and everything which just said it all. Andrea never saw anything - she was just laid flat on her back. I was sat there and it was just a heart wrench. Everybody knew. Everybody in the room knew something apart from us and then about 10 / 15 seconds later the nurse came over, pulled me to one side, showed us - what did they call it?
Moningeseal they called it. She said Jack's got a moningeseal on his spine. I didn't have a clue what it was. Not a clue.

Mother: Nobody mentioned spina bifida did they?

Father: No, not at first. They took our Jack away. They took Andrea to recovery. They took me to have a little chat with the doctors, with a paediatrician at Hartlepool and that's when I asked if it could be spina bifida. He said 'that's exactly what it is, spina bifida.' It was just, oh, horrendous. I didn't know what to feel. I just felt sick, felt disappointed, felt, I don't know really, just frightened of everything.

Mother: Every day they were doing different tests on him, like his head to make sure his head hadn't grown any bigger because he was on the 99 th percentile when he was born, his head circumference, which is large for when he's first born. Then they were measuring it all the time because they thought they were going to have to put a shunt in which luckily he did get away with without having a shunt fitted. Like everything was just one thing after another wasn't it? Like one worry after another. It was like we were just getting over one and another hurdle would come. But I think it really affected our James didn't it?

Father: I came back from hospital, took our James home, he had a photo of him and that, and he was just like well why can't he come home? We were trying to explain to him that he had a poorly back, and he says 'well it doesn't matter, we'll just bring him home, it'll be alright.' And obviously it's like us, we didn't understand it, so we couldn't really expect our James to understand it either. He wasn't that upset at first but as soon as he went up to the hospital up to the RVI and he knew he had to have operations, that's when our James started getting upset and just one thing led to another, from the closing the back to the operating on the feet. It was just horrendous.

Father: He was in the RVI just getting his back closed and measuring his head for about 4 days I think it was, and then he came home and we had to take him back in the next day because his wound had swelled up on his back where it was closed. He was in for another couple of days and again luckily Mrs Lawson who operated, she didn't think a shunt was necessary. We're thankful now, like. But hospitals - we know he's had at least 250 hospital visits, at least, since he was born.

Mother: But it's just every week you're either at the doctor's or the hospital, or... but it's dwindling down now isn't it? When he was first born he was there every day to a different hospital.