Anti-D Women

This is my story about the Hepatitis C scandal in Ireland

I was born by the sea. I married young. And became pregnant and attended the antenatal clinic. There I was informed about the Rhesus Factor and told that I would need Anti-D. This Injection would destroy any RHD positive blood cells that may be crossed over into your bloodstream during birth resulting in antibodies being produced to protect your next baby. Unfortunately, I had a difficult pregnancy and was relieved when I gave birth to a healthy baby boy in 1976. However, I have a vague memory of being given Anti-D at that time.

Indeed, I got on with my life but was in a difficult marriage and my days were filled with struggles. In fact, I became pregnant again and had a miscarriage early in the pregnancy. Again, I fell pregnant and in December 1977 I had another baby who was born healthy but two weeks later he developed a serious illness which still needs surgery to this day. This was extremely difficult to deal with as I had very little support. Again, I had another miscarriage and was feeling very unwell I suffered from fatigue, arthritis, irritable bowl, and depression. However, I felt my doctor did not understand what I was going through and sometimes I wondered did he think I was hypochondriac! In fact, I had lovely teeth but because of Hep C I lost a great number of them through gum disease. Having dental treatment was very disturbing as all switches were taped up and the dentist was wearing protective clothing. I felt extremely tired every day and felt very alone. My marriage was in serious difficulty and broke down in late 1988. This was a very emotional time for me. and I was also dealing with my son’s illness, and I was on my own. I was barely managing financially and had to find work and was under a lot of stress.

Then on the 21st of February 1994 I heard a report on the radio about Anti-D. I did not understand the significance of the revelation however, I was curious and later I decided to ring a help line number that they mentioned in the broadcast. The phone call was very short, and I got little information and was told to go the Blood Bank clinic. I was very confused and wondered if this was relevant to me. The next day I attended the clinic and underwent blood testing. I was given no information and felt very vulnerable. Next, I went into a room and spoke to a doctor who asked me about my sex life, and if I had multiple partners and about piercing my ears. I was quite shocked and upset and left the room in tears. The next day I went to my G P and told him what had happened he said the likelihood of being infected with Hep C was one in a million. My memory is of waiting three weeks (approx.) for test results which was very stressful. My GP called to my home and told me the test results showed I was positive for Hep C and I would have to attend for more tests at a Hepatology unit.

Initially, I was quite shocked about my diagnosis wondering how this would impact on my life. I felt very isolated and could not speak to others about it as there was a stigma about Hepatitis. Subsequently I attended the Hepatology Clinic and underwent further blood tests which were sent to Edinburgh for detailed analysis. At that time, I had to have a biopsy to assess my liver damage. This was not a pleasant procedure as you are awake, and it has serious side effects like collapsed lungs. I had one more biopsy a few years later as this was the gold standard for assessing the state of your liver. Eventually I was told that I was Type 1B; this did not respond to any treatment at that time and my liver damage was moderate.

At that stage I had Fibromyalgia symptoms which were pain in most of my joints and severe fatigue. I also suffered brain fog among other ailments. When I heard that a support group was being set up, I decided to join. This group’s aim was to put pressure on the government and the HSE, to provide a proper health care package for the infected women. They also sought compensation for the terrible injury caused to them. This process was very arduous in fact, instead of it being an accident it began to appear that the disaster was from terrible negligence by the Blood Transfusion Board. On July 21, 1995, the umbrella group for the women was warned that unless they went quietly to the Compensation Tribunal they would face “uncertainties, delays, stresses, confrontation and costs.” We were told by the Minister of Health Michael Noonan, to go to the Tribunal or they would pursue the women through the courts. Bridget Mc Cole, a mother of 10 from Donegal, was treated appallingly by the state and it later emerged that she was pursued on her death bed to accept a settlement from the state. This case remains as a blot on the State’s record, in relation to the treatment of women in health care.

Eventually in 1996, I went to the Compensation Tribunal in Dublin It was harrowing having to put my life story across to three judges to decide what your suffering was ‘worth’. My health was not great, and I had to give up working as I was not physically capable. The compensation I received will never give me the quality of life I would have had if I had not contracted Hepatitis C. Over the years my health deteriorated.

In 2017 a new treatment became available in Ireland for Hepatitis C. I received this treatment, and the hepatitis C virus was eradicated from my liver. I was very grateful for this treatment. However, the damage done to my liver remains. It was great to rid my liver of the “virus” but I personally feel no better having this treatment. My energy levels are very limited and there are times when I have to cancel plans because I am not physically able. When I was diagnosed originally my Hepatologist told me not to drink alcohol and I have abstained since that day. Prior to diagnosis if I had any alcohol, I felt quite unwell but did not know why. Many Hep C patients have died over the years; this is very distressing for their families and for other survivors. Successful treatment came too late for many people.

I would love to see the medical profession learning from past mistakes. Many young doctors in hospitals and indeed GPs have no knowledge of this scandal. It is hard to have confidence in the health system when Cervical Check scandal has happened. In recent years. Many more problems have arisen in the health service. Anti-D Women was set up a number of years ago. We still need dialogue with the H S E and offer support our members and address any issues they may have with their entitlements.