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Charlotte & Nell's story

Increasingly we are hearing from families whose children are also affected by hepatitis C. We are extremely grateful to Charlotte and her daughter Nell, aged 10 when she wrote her story, who have both been through the treatment, for sharing their experience, which we hope will be inspiring for other mums and children out there.

Often a test for hepatitis C will be given to pregnant women or those who are undergoing preparation for IVF treatment. Having to come to terms with their own diagnosis and then discover that there is a 5% chance they may pass/or have passed it to their children is a difficult and emotive situation.

Nell’s story

When I found out I didn't know the name of what I had - till I was seven and a half years old all I knew was that I had a liver disease. I had it when I was born. I had my first biopsy when I was 18 months in June 2000 and my second one in November 2006. I remember that winter I went to Egypt and being really tired and saying to my mum "I think it might be something to do with my liver problem." Six months later I started treatment in London and then I found out that I had hepatitis C.

My first injection

On the day I was going to have my first injection I waited in the ward and I got a bit bored so I asked a kind looking boy around the age of 13 if I could borrow the play station (there was one in each ward) and he said yes, so a nurse helped me take it to my bed, while my mum and the boy’s mum started chatting, then the nurse called me in for the injection and walked into a room and the nurse got out a cold spray thing and sprayed it on me.

It was absolutely freezing (as from its name) and immediately got a needle and put it in my leg. It was horrible (even with the cold spray) I wanted it to stop so much, but I know that if I wanted to get better I had to have it. I had to have it every Friday for the next six months.

What did they do?

The hospital got a psychiatrist for me to talk to about everything and how I felt and if I was having bad dreams and how I felt at school and stuff like that. She was really nice and she really understood me - at that moment I was feeling like no one understood me - we did lots of things like drawing, talking and writing. When I stopped seeing her I got quite depressed as I didn't have anyone to talk to, so I had to start again.

After treatment

After my treatment my mum had to start and asked me to help her, like a stabiliser. Sometimes she was happy and then suddenly turned angry. Sometimes it was scary, sometimes it was upsetting, sometimes it was both…

Charlotte’s story

It was supposed to be a run-of-the-mill hospital appointment for my 6 week old daughter. Half an hour later I had found out not only did I have hepatitis C, but I had passed it on to my new baby. Six months later however, she had sero-converted and tested negative. My paediatrician assured me there was a mere 2% chance of my next child being positive. That’s two more than nought, I thought – not the best odds.

The nightmare started as soon as little Nell was born. A sign on the ward loo warned other mothers it was only to be used by me. The isolation I was left in was an indication of how people were going to react to our diagnosis here in the West Country. At 18 months Nell’s blood test confirmed my worst fears - she was positive. After the initial shock, the questions we never want to ask about our children arose. Will she get cancer? Will her liver fail? Even, will she die?

I was advised by her consultant not to tell her school - unfortunately I had already informed the head of her nursery school who then mentioned it during a conversation with the head teacher at her new primary school.

Furious, the Head called me at 8am one morning, summoning me to see her. In her ignorance, she was concerned about the risk to other pupils and staff – and I guess other parents’ reactions - echoing the reaction to HIV/AIDS 20 years ago, the same ignorance that breeds fear and needless panic.

The County Council lawyers were called, while I contacted the Department of Health and every organisation I could think of to fight my corner, preserve Nell’s anonymity and keep her in the school with her siblings. Consequently it was another two years and when she was half way through treatment that she had a name for her ‘liver disease’. I was terrified she would be ostracised at the small village school.

The happy ending to this came two years later when the school carol service raised money for Kings in Nell’s name. Two years ago Nell underwent pegylated treatment for hep C. As part of the first group of kids to have this treatment, the experience was an emotional minefield. Not only was she given an overdose of interferon with her first injection, but she suffered side effects including fatigue, hair and weight loss, low white blood cells, depression and insomnia.

I hope the medical establishment have learnt that children deserve and should be offered emotional support in tandem with the medical treatment. We had to fight to finally get a weekly appointment with a child therapist to help Nell conquer her fears and confusion over an illness she didn’t at first have a name for (I learnt that something nameless is far more confusing, dark and sinister), and subsequent treatment that caused her to miss out on nearly a year of school, lose friends, cry and scream in frustration.

We survived, thanks to the support of our wonderful paediatrician – the one who broke the news 8 years earlier, and the friend and her son who started treatment the same day as my daughter – and sadly didn’t clear. Our GP and surgery were fantastic too – another steep learning curve for them. Nothing can prepare you for the guilt attached to bequeathing a child an illness, or the deceit one has to resort to in order to protect them from people’s assumptions about Hep C.

I now have a daughter with a wisdom and emotional intelligence beyond her years, an eight year old child who supported me when I sobbed with misery during my own treatment, ‘remember, mum, just breathe – this will pass’. A girl who has the remarkable gift of empathy and compassion that many adults lack, due, in part to her experience of illness and treatment. One who tells the world she has hep C and has no shame or guilt, but is proud to share her experience with others. I can learn from that.

If you have concerns about your children if they are affected by hepatitis C please don’t hesitate to call us on the helpline for guidance. You can also discuss any concerns and order specific literature around hepatitis C and children from the Children’s Liver Disease Foundation on 0121 212 6014 www.childliverdisease.org

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