In the mid-1980s, Anna* contracted hepatitis C via blood transfusion. She was not diagnosed until more than a decade later. Although the risk of transmission from mother to baby is low, Anna’s oldest daughter also tested positive. In this blog, Anna shares their story in order to shine a light upon the very real impact of the contaminated blood scandal and how it changed families forever.
Two days before Christmas 1985, I experienced an ectopic pregnancy. It was horrendously messy and I had to be given three units of blood to make up for the amount I had lost.
Despite the complications, I was over the moon to give birth to a gorgeous baby girl, Ella*, two years later. She was perfect and together we set off to Australia on a new adventure.
A decade on, I found out that I was pregnant again. This time, my pregnancy felt different. For one thing, I was tired all the time. I put this down to work, motherhood and the Australian heat. But then I started itching like mad. It got so bad that I bought myself a hairbrush and used it to scratch my arms and legs.
The doctor prescribed me a type of antihistamine that was safe for pregnant women but it didn’t help at all. That’s when I was asked whether I had ever used needles to take drugs (no), if I was a heavy drinker (no), or if I had ever had a blood transfusion.
“Yes,” I said.
A blood test for hepatitis C was ordered. It came back positive.
It was then suggested that Ella should have a blood test. This came back positive as well.
That was the moment the news really sunk in. Not only did I have this virus I’d barely heard of, but I’d passed it on to my daughter.
The only way I could cope was by putting the diagnosis to the back of my mind and doing everything on autopilot. I had another baby on the way, I had to take care of them both and continue to work and provide for them.
Receiving infected blood changes your outlook on these things. Not only do you experience health anxiety, you also experience a deep mistrust of the medics you’d once hoped would help you.
Ahead of giving birth to Becky*, I was terrified of passing the virus on to her too. To make matters worse, she was breeched and meconium was present meaning the delivery team had to use forceps to get her out quickly. I was very aware of how much blood was in the room.
It was an incredibly isolating experience; not only did I have a horrible birth, but the medical team were wearing what looked like hazmat suits and goggles. I understand that they needed to keep safe but it made me feel dirty and so alone.
I had to stay in hospital for two weeks after the birth. I had lost a lot of blood again and the doctors wanted to give me another blood transfusion. I refused at first. I was terrified about catching something else from the blood. Receiving infected blood changes your outlook on these things. Not only do you experience health anxiety, you also experience a deep mistrust of the medics you’d once hoped would help you.
To reduce the risk of passing hepatitis C on to Becky, I did not breastfeed her. Hepatitis C cannot be contracted via breastmilk but I didn’t know this then and I didn’t want to take any risks. It was an enormous relief when it was confirmed that she had not contracted the virus.
Life plodded on. Ella knew she had to be careful about cuts and scrapes and carried around a box of plasters and some wipes just in case. But she managed to have a mostly normal childhood and enjoyed being one of the girls.
Looking back, I think I was in denial really. I didn’t want to tell anyone I had hepatitis C because there is so much stigma attached to it; especially around drug use. I didn’t want us to be thought of as different or like a family that should be avoided.
We returned to the UK and we were offered Interferon, a treatment that worked in about 50% of people. Ella was 20 by now and had lived her whole life with hepatitis C. The doctors recommended that Ella try the treatment first as she was younger and would be less likely to react badly to it.
She managed the treatment quite well and was able to keep up her job at a computer shop. The fridge was stacked with needles as you had to inject it. After a year though, the treatment was unsuccessful. Once again, I felt like we had been failed by the health professionals; I decided that I did not want to try the treatment.
It was Ella who convinced me to give it a go in the end.
“What if it works for you though mum?” she said.
The treatment sent me to very dark places. I lost a lot of hair, a lot of weight, and I felt like I didn’t want to be here anymore. At one point, I considered jumping out of a window.
I was put on antidepressants on top of the interferon treatment and in all honesty, I can’t remember much of that entire year now. At the end of it, I still had hepatitis C. The toll it had taken on my mental health and family relationships was for nothing.
Eventually, a new tablet form of treatment became available, clearing the virus for me with few side effects. Ella, however, having been let down so many times by the health system, refused to try again.
Ella met her partner and eventually became pregnant. She was thrilled, although the doctors picked up a tangerine segment-shaped mass at one of her scans.
A fibroid, the doctors said.
After the pregnancy, they said they would go in and remove it.
Following the birth of my grandson, Ella was at home when she screamed out in pain. After a long wait in A&E, she was rushed into surgery where she bled out profusely as I stood waiting outside the theatre for any news at all.
The tangerine segment was not a fibroid after all – it was a tumour.
Because she was still hepatitis C positive, there were a number of treatments and trials which were not available to her.
Whilst going through chemotherapy, Ella did not complain once. But once again, we received news that medical treatment had not worked for Ella and she only had a matter of months to live.
We had a final Christmas together as a family and Ella went on fighting until we lost her in April 2016.
I still shoulder an enormous amount of guilt for how Ella’s life turned out. I ask why it couldn’t have been me instead of her; she was so young and so full of life. I’d give everything to have her back with us.
To go through a series of devastating medical incidents leaves families in emotional turmoil and destroys lives. At no point were we offered counselling or support to deal with our pain. Only through reaching out to The Hepatitis C Trust helpline have I had some relief.
If I could give anyone any advice who faces similar circumstances, I would say to trust your instincts when it comes to your health. No one knows your own body better than you and medical professionals do make mistakes. Demand to be tested; demand to be heard.
*The names in this story have been changed