This Tuesday sees the start of an official inquiry into the deaths of 53 babies during heart surgery at the Bristol Royal Infirmary. Two doctors have already been struck off by the General Medical Council (GMC), who conducted their own investigation, yet questions remain unanswered. The inquiry will examine pre- and post-operative care, and scrutinise standards from the Department of Health down. Diana Hill - whose case was not dealt with by the GMC - tells Elisabeth Winkler that she wants just one question answered: why did her daughter die?
JESSICA WAS born in 1988, a healthy baby but with a heart murmur. After various tests, the cardiologist reassured me that there was nothing to worry about and I believed him.
She was a lovely, well-behaved baby. As the months went by she became a real little person in her own right. The check-ups continued and I was told by the cardiologist that Jessica would probably need an operation, but he was still not overly concerned.
He said he was waiting for the hole in her heart to close. But the surgeon I saw when Jessica was eight months old took a different line. He said: "There's nothing I can do for her." I was so shocked I started crying. He seemed taken aback that I didn't know how serious my daughter's VSD (ventrical septical defect) was. But how could I? The cardiologist had assured me that there was no hurry to operate.
Now suddenly Jessica seemed to have a terrible heart problem. The surgeon gave the operation a 50 per cent chance of success but without it, Jessica would die. He said: "The surgeons get the worst job of telling the parents."
But all I knew then was that my baby's life was suddenly in danger. I was a single mother: Jessica was everything to me. I would have flown to America for surgery if that would have helped. The next day my mother rang the surgeon out of sheer worry. We believed that Bristol was the best and that I was lucky to be under their care. I had another appointment with the cardiologist. He agreed that the operation was now an emergency because of pulmonary hypertension and that it had a 70-80 per cent survival rate. Why was she suddenly an emergency? Why had he been so laid back before?
These questions were at the back of my mind but I didn't dare ask them. He has a nice face: I couldn't believe that doctors could make a mistake. Jessica was admitted three weeks later. The night before the operation, four different people, doctors and nurses, said in passing: "You don't have to have this operation," or something similar. Looking back I think they were trying to give me a message, but it was done in such a throwaway manner that I didn't understand. No one sat down and explained to me in a way that sunk in that after all this time my baby's condition was now inoperable.
I was in a state. I felt that I was losing Jessica and there was nothing I could do. Whether she had the operation or not, her life was at risk. That night was the first time she pulled herself up in her cot. She held on to the bars, laughing, pleased with herself.
Although I was told that the operation was successful, she was in a critical state afterwards. Several times she had a cardiac arrest and was resuscitated. I felt powerless: I just wanted to take her home. Two other patients died while I was there, a baby and a little girl. The curtains closed, you could hear the distress of the parents. A nurse said: "It's a bad patch", and I can remember feeling grateful that Jessica was still alive.
The following night she had another massive cardiac crisis. I sat in a dingy side room as the doctors tried to revive her. I couldn't cry. I was barely clinging onto a little bit of hope. The registrar came in: "I'm sorry, there was nothing we could do." Someone brought me a cup of tea, then Jessica was carried in, wrapped in a hospital blanket - cold, dead. I will never forget holding her in my arms. As soon as day came I went home to an empty house. Jessica's toys and clothes were still there but she wasn't.
It was beyond belief. Somehow I found the strength to get through the nightmare, minute by minute, day by day. In 1992 I got married and began to feel the glimmerings of happiness again. Our son James was born two years later, also with a heart murmur, and we went back to see the same cardiologist. "He can be operated on when he's about 15," he said. Again I just wanted to believe that everything would be alright.
I decided to take up nursing and I enjoyed it. But some way through my training, the Channel 4 Dispatches documentary was screened and I learned that far from being the best place to have heart surgery, Bristol was one of the worst. The authorities had known for years. It seemed that professional loyalties were more important than children's lives.
I had always had the nagging suspicion that Jessica shouldn't have died. Now I realised that something had gone terribly wrong and that I wasn't alone - there were other parents like me, grieving for a death that might have been avoided. It was hurtful to hear but the truth needed to come out. I found hospital nursing difficult after that. I dislike the hierarchy, the secrecy, the corruption. If a nurse does something wrong, she or he is trampled on but if a doctor does, it's just a slip. Doctors need to be accountable like everyone else.
When James was three, our GP became concerned about his heart murmur and sent us to see another cardiologist at Bristol. He knew nothing about Jessica and I had to explain everything. As I did, I started crying. All the horror of her death was coming back.
He arranged for tests and then said James would need an operation. My heart sank. I was full of questions but he maintained everything would be fine. "James is more at risk from falling off that chair than having this operation," he said. I was shocked - he seemed to have no idea what I'd been through after losing Jessica.
Although the figures show that heart surgery is now supposed to be safer in Bristol, I couldn't face going there. James was operated on in Birmingham last December and everything was fine. It was such a different atmosphere from what I had experienced with Jessica: everyone seemed more professional and caring.
I felt tortured: if only I could have brought her here. I am haunted by "If onlys". The hardest one is knowing that I signed the consent form. If only I had been more assertive. If only I had asked questions and stood up for myself. I was brought up to keep the peace but I feel that by doing so I failed my daughter.
I found out recently that my daughter's heart and some of her brain was retained by the hospital pathology department. It feels yet another blow which could have been avoided. No one even had the decency to ask my permission. Now I am left with the decision of what to do with her organs. The torture never ends.
There are lots of people like me whose cases were not heard by the GMC and I do a lot of informal counselling. Some of the stories I hear from other parents are horrific. The GMC had a very narrow focus. That's why I demonstrated to get an independent public inquiry and I was part of a team of parents which had meetings with Frank Dobson. I was so relieved when he announced that there would be an inquiry. It is the only way I'll get my say. The inquiry will be distressing but I want to know the truth. I can't rest until I do.
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