Hepatitis C discovery was too late for family of one victim

MRS S from the midlands died on January 10th, 1990, at St Vincent's Hospital, Dublin, two days after she had received a liver transplant. She was 38 years old and left behind a husband and six children, the youngest just three years old.

Her death came after years of battling a sickness which had symptoms we now know to be consistent with hepatitis C infection: fatigue, listlessness, nausea, a low blood count, flu like symptoms, a swollen abdomen, arthritis, eye problems and itching of the skin. She developed an unhealthy sallow complexion.

She became so unwell that in 1987 her husband took time off work to care for her and the children. Eventually he was forced to give up his job.

She was often unable to get out of bed because of her fatigue. She attended her GP and the out patient clinic of her local hospital, and was treated for various ailments. But no cause was found.

In September 1989 Mrs S became severely jaundiced and ill and was admitted to hospital, where she stayed for a month. She tested negative for hepatitis A and hepatitis B.

After being discharged from hospital, her condition continued to deteriorate and she was readmitted in late December 1989. She could not stand up or brush her hair.

She was transferred to St Vincent's Hospital, and the referring consultant wondered whether hepatitis C might be the cause of her liver disease.

Her husband told the doctors his wife had received several blood transfusions.

The doctors at St Vincent's carried out a liver transplant on January 8th, 1990. Mrs S died two days later.

Her death certificate read "Haemorrhage 3 days post orthotopic liver transplant. Cirrhosis, Chronic Active Hepatitis (Non A - Non B) 10 years." (The reference to 10 years is understood to be because her husband had said he thought she had a blood transfusion in 1979.)

After the anti D scandal broke the family of Mrs S began to make inquiries. They discovered that, tests carried out six days before her death, and on a retained sample in August 1990, showed Mrs S was positive for hepatitis C.

However, these were first generation tests and the family have been told they are "not scientifically validated".

Consultants have queried the results and said other tests indicate Mrs S was not infected with hepatitis C. So, unlike the cases of people still alive and infected with hepatitis C, or of people who survived until the 1991 test became available, the family of Mrs S cannot prove she died as a result of hepatitis C. Nor is it known whether the blood she was given came from a hepatitis C infected donor. The batch numbers of the blood given to Mrs S in 1984 are known, but as the donors have not returned to the BTSB since 1991 it is not known if they are hepatitis C positive.

The family say they have been told it is not BTSB policy to approach former donors in such cases. They have notified the Compensation Tribunal of their intention to seek compensation and have been building their case.

However, they are finding it difficult to prove.

Although no one was at fault for Mrs S becoming infected, in the sense that no screening mechanism for hepatitis C was available at the time she was given blood, this will not prevent people still living who were infected in an identical way being granted compensation.

"People like our family are being disadvantaged," said Mrs S's sister. She wants the Minister for Health, Mr Noonan, and the tribunal of inquiry which is to look into the HIV and haemophiliac issues, to address directly the problems confronting families such as hers.

"I think there are a lot of other families out there like us and they have not come forward."