Thomas Rice and mother Jane
Thomas was born in May 1995. His mother Jane was 24 weeks pregnant and spent the next three months living at the hospital.
She said: "I can always remember lying there when you are going to bed at night time and then you can hear the footsteps coming down the corridor and then you hear the door open and you lie there thinking "Please don't open those curtains. Don't let it be my bed you come to"
But from the time Thomas left the hospital after five months, they found it difficult to cope with a baby who was developing much more slowly than their older son William.
Thomas, now nine years old, couldn't even crawl until he was 18 months old and even then only used his arms to move.
As Thomas grew up, his parents also noticed that he wasn't interacting with the world around him in the way that they expected.
Jane said: "The worst times with Thomas were when he was very small. We were expecting him at two, two and a half to be toddling around, chatting, inquisitive and into everything.
"It was like looking at a wall. He couldn't make any cognitive decision."
The results of the EPICure study showed that he had moderate learning difficulties, but it was something that his parents already knew.
Thomas couldn't read, write or count after his first year at school and he wasn't very responsive with teachers.
Jane admits that sometimes "it takes all the strength you've got and more" to cope with him and that he pushes them to the limits.
And in those difficult early years, Jane has admitted that there were times when she wished he hadn't survived.
Now, at the age of nine, Thomas is learning to read and his mother has changed her mind.
She said: "Now I'm his mum in the full sense of the word. I love him. If anyone did anything to him I'd kill them. Simple as that. You know what motherly love is. There's nothing else like it.
"You'd kill for your kids. At one time I didn't feel that for Thomas but I do now."
Panorama: Miracle baby grows up is broadcast on BBC One on Wednesday, 22 September, 2004 at 21:00 BST.