Mother: Jack's nearly 2. He'll be two in February, and our James is 8.

Mother: At the moment he still can't walk, but he is taking a few steps now. Other than that he's champion. Really good in himself. He's more advanced than a lot of children his age.

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, but the main thing at the minute is his walking. He should be up on his feet now and he's not.

Mother: Though he did have a lot of operations.

Mother: He's not paralysed. He's spina bifida but 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.

Father: He had an open spina bifida at the base of his spine and his feet is congenital vertical talus and more of his right foot really was stuck. His toes were just about touching his shin and he had very little muscle in his calves and Mrs Quinby, his consultant, did a couple of operations on each foot and now his feet are lovely and flat and he's just started taking a couple of steps. So it's pretty good that his feet are absolutely marvellous now like to what they were. They're brilliant.

Mother: When he was born. About ten seconds after he was born. It was 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 me - 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.

Father: I didn't know what to feel. I just felt sick, felt disappointed, felt, I don't know really, just frightened of everything.

Mother: Because when you've never heard of spina bifida you don't know what to expect do you? And the main thing that was in my head was our James. That's the main thing that I was thinking. What about our James? What's he going to think? He expected to come in and take his baby home and then when we told him and he came in... he didn't really understand, did he, at first? But we never hid anything from him. We made sure he knew everything that was going on. It really affected him.
But it was all the tests and everything wasn't it? 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: Oh, you could see he was worried all the time. The night that Jack was born, 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. Ann Walton came up (from ASBAH) - it was the day after he was took to the RVI, like the third day, and she left Andrea with a load of leaflets and you just can't look at them, you just don't want to know about them. And just reading all those leaflets is so frightening, at the time it was anyway.