Personal Column: Saul's story

A couple fought in court last week to keep their ill son alive. Rosemary Kay decided to let her brain-damaged baby die

Saul was born very prematurely. I was 23 weeks pregnant and he weighed only 1lb 4oz. He was our first baby and I'd already had a miscarriage. It was a complete shock. He was taken into intensive care. I had never seen anything like it before. It was very space age and very, very frightening.

Premature babies look like little old men. But Saul was beautiful as far as we were concerned, except that he was filled with IV lines, splints and there were tubes down his nose, throat and into his belly button.

While the staff looked after his physical health, Tim and I were more interested in his emotional wellbeing. He could feel everything and very quickly developed his personality and the way he responded to the staff. Sometimes he was even fed up with us.

Saul had huge problems but the staff managed amazing things. When he was about three months old he left intensive care and we were preparing for him to go home. I think the hospital was just waiting to fatten him up a bit. But suddenly we knew something was wrong. He started screaming and, looking back, showed all the symptoms of meningitis. He deteriorated rapidly and at one stage his temperature went up to 42 degrees. But the staff were just too busy to cope with a screaming baby who, as far as they were concerned, was all right.

We went home, which is something I will always regret. In the middle of the night the hospital called. Saul was back in intensive care and there was a junior doctor on her own with about 15 very poorly babies. He was stabilised with morphine, put back on the ventilator and given 100 per cent care again. The staff took a lumbar puncture, and the test for meningitis came back positive.

I was very angry. Everybody was very shocked. I think it was a thump in the guts for all the staff who had worked so hard to get him as far as they could. They did a brain scan and said he had global brain damage.

Five days after the diagnosis we decided to carry on treating him and to give him a chance. I was determined to get him home at that stage. We knew it was going to be very, very tough looking after him.

We had a fantastic consultant who was very honest, very humane and whom we felt was on Saul's side. He said some babies did far better than a scan could predict and others did worse. We took the decision, with the doctors, that if he relapsed and needed to be put back on a ventilator, then perhaps that wasn't the kindest thing to do. We had been with him for four months and seen him fight in that very tough environment. We didn't want this to be his whole life, relying on people and living in institutions that possibly don't care for him in the same way a parent does.

Saul started to improve and seemed to belie the extent of the brain damage. We thought we had made the right decision and that he might have a good quality of life. Then he relapsed, and in the heat of things was put back on the ventilator. We then had to decide what to do. His head was swelling up and he seemed worse than he had ever been. It was clear the staff thought taking him off the ventilator was the right thing to do, but they weren't putting pressure on us. They were very wise and very kind and were waiting for us to come round to the decision.

A very good friend said "Why don't you ask Saul what he wants?" It sounds barmy, but I did and it was very clear. I looked at him and his fists were clenched and he was not the same child any more. He wasn't there really. We felt he had made the decision. My husband and I looked after him in shifts and we both decided separately that it was time to let him go.

I pressed the staff to do it quickly because once I had made the decision I couldn't bear Saul to be in any more pain. They took us into a private room. They just took all the lines out, apart from the one that gave him sedatives so that he wouldn't be in pain. The family came and said goodbye and then we just waited. He died in his dad's arms. It was three days away from his original due date.

I'm a completely different person now. I think it's made me a lot harder. Both Tim and I changed careers afterwards. It was as if we wanted to say "that's who we were and it wasn't good enough". He was an actor and became a management consultant. I had been a lecturer and became a writer. I wanted to give Saul a voice and wrote the book Between Two Eternities from his perspective. I then wrote a screenplay called This Little Life which won a Bafta.

It's been 10 years now and we have two children, Ruby, seven, and Freddie, three months. I've never regretted our decision. I honestly believe that was what Saul wanted. In a way it was as if he was more mature than we were, and he was just waiting for us to come round to it. It was so obvious that he had gone and that he was just waiting for us to let him go properly. He's buried with his grandfather so we visit his grave regularly and his photographs are all around the house. I'm extremely grateful that Saul was born and that I knew him.

Rosemary Kay was speaking to Julia Stuart