A bitter pill to swallow

ethinyloestradiol

In response to the growing concern over the number of teenage deaths that maybe related to the contraceptive pill, John Arnold questions why his own daughter, always fit and extremely health-conscious, died of a massive blood clot

I was at work when the telephone call came. My daughter Sali had been admitted to a hospital in Manchester and I was to contact them urgently. I got through to the ward and a sister told me Sail was critical. How critical is critical, I asked? She passed the receiver to-Sail’s boyfriend Daniel. "I’m sorry, John, she’s gone," he said.

Sail was 22 when she collapsed in the street and died of a massive pulmonary embolism. She was in her final year studying for a biology degree at Liverpool polytechnic and had everything before her. I’m biased, of course, but I think everybody who knew her would agree that she was a lovely, kind person. full of vigour and fun. She always wanted to help people less fortunate and had spent several summer holidays as a voluntary worker with handicapped children. She was training to be a rape-crisis counsellor and was against apartheid, poll tax and anything that she felt was unfair on the poor or defenceless. There were 400 people at her funeral and many of her friends still keep in touch.

I still ask myself how it could have happened. That question went round and round in my mind on the nightmare journey from our home in Cardiff to break the news to my wife Sheila, who was staying with friends in west Wales. Sali was never a sickly child. She was fit, healthy, and very slim. She would only eat wholesome foods. She didn’t smoke or take drugs; in fact, she would rather endure a headache for a day than take an aspirin. There is no family history of cardiac problems or blood clots. A clue to her death came at the inquest.

The pathologist reported that Sali had not been suffering from any long-term condition or illness that could have led to the blood clot which killed her. He then mentioned that she had been taking the contraceptive pill. Sheila called out that she had the pills in her handbag and she was asked to take the stand.

She told Leonard Gorodkin, the coroner, that Sali had gone on the pill around Chtristmas time, a couple of months before she died.

We were a very close family and Sali talked to her mother about everything. She had been going out with Daniel, a fellow student, for more than 3 years and they had decided to live together. She was in her final year and did not want to risk a pregnancy so had decided to take one of the new low-dose "safe" combination pills.

Sheila was concerned when she discovered that Sali had been prescribed six months’ supply of the pill. She felt that doctors should have given it monthly at first so that they could monitor any side effects and follow them up.

When my wife stepped down from the witness box there was a lot of discussion between the pathologist and the coroner about the fact that blood clots were a known but rare side effect of the combined pills. The risk increased for people who smoked heavily, were overweight or whose close relatives had suffered clots or cardiac problems. None of these risk factors applied to our daughter, but the coroner decided it was a likely factor in her death. He recorded a verdict of misadventure instead of natural causes, saying Sali had taken a medication for one reason and it appeared to have had a different effect. In other words, our daughter, who was so health-conscious she refused to take aspirins, probably died because she took a pill she believed to be safe.

Sali died five years ago, and since then I have just felt that we were the unlucky ones. Millions of women benefit from taking the pill because they escape all the problems and complications of unwanted pregnancies, and though there are risks of fatal blood clots, they are extremely rare. I know, as Sali did, that there is always a risk with any kind of medication.

But last Sunday, when I picked up The Sunday Times and read that other families are bringing legal action I began to think differently. According to the coroner the pill was prime suspect in Sali’s death. There is no mention of the contraceptive pill on the death certificate, however, which just records the cause of death as a massive pulmonary embolism. Sali’s death, therefore, would not have been referred to the Committee on Safety of Medicines, which only hears about those where the contraceptive pill is listed by the coroner as a cause of death.

So when we are told, as we were last week, that the risk to pill takers of dying of circulatory disease is six per million, I’m afraid I doubt the accuracy of the figures. I feel there was every indication the contraceptive pill was a factor in Sali’s death, yet it appears she will not be included in the figures.

Last Tuesday, I phoned a solicitor handling pill cases, not because I wanted to take legal action at this late stage, but because I wanted to draw Sail’s death to her attention. She had several other cases on her desk of young women who had died shortly after going on the pill and where its contribution had been discussed at length at the inquest but had not been mentioned on the certificate.

The coroner’s office in Manchester last week confirmed that the pill had been talked about as a factor in Sali’s death, despite it not being recorded on, the certificate. My wife and I couldn’t remember what pill she had been taking and an officer said that the handwriting on the notes from the hearing was so poor they could not tell whether it had been Marvelon or Mercilon.  Both are made by Organon Laboratories but, I understand, contain the same hormone, ethinyloestradiol, as Femodene, the combination pill manufactured by Schering, and mentioned in The Sunday Times story.

Sail’s sudden death put an enormous strain on our family. My wife and I tried to come to terms with it in different ways. I tried to be practical, to be strong and to support my wife and our son Robert, four years younger than Sali. He was preparing for A-levels when she died, and we were very concerned about the effect of the tragedy on him. I went round the house hiding those things of Sail’s which I thought would upset my wife. I had all the correspondence, such as the death certificate, sent to my office. I became emotional and still do, but usually in private.

My wife tried many things to try and help her cope with the grief. She changed jobs, she tried counselling and started to attend church more regularly. In the end our marriage broke up and we both agree that, though other factors were involved, we would probably still be together but for the shock of Sail’s death. Sheila now lives in New Zealand and we are divorced, though we are still friends and speak regularly on the telephone.

I did not just lose my daughter, I lost the closeness of my family unit as well. I’m not bitter about Sail’s death, I don’t want the pill taken off the market immediately, though I know some other bereaved parents do. What I want from the manufacturers and the government is openness. Are they recording every suspected pill-related death? Are they recording every blood clot suffered by pill users who survive?

Surely there should be more prominent warnings about the risk of blood clots and of the signs to look for. Sali had complained of pains about a month before she collapsed, which was unusual as she was always so healthy. She had been to her GP who was going to arrange a barium meal test but she died before it took place. What we will never know is whether she would be alive today if she had known the early signs to look for and gone for help in time. The manufacturers say that warnings are given in the leaflet included in the packet, but these were in the small print.

Any parent who has lost a child knows that though the pain gets more bearable, it never goes away. Sali is still with us in our thoughts every day. We remember her with pride. Her death should be included in the statistics, not brushed aside as an unfortunate but rare tragedy.