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Feelings are so important

Childhood liver disease affects the whole family so we love to hear the experiences of siblings. We’re very grateful to Zara for sharing what is a unique story. Her brother, Steven, had an incredible six liver transplants before he died earlier this year, aged just 28.

Steven was three years older than me. He was born with biliary atresia and had received two liver transplants before I was born. He’d suffered complications very soon after the first but for the second one, he received part of my mum’s liver. At the time he was only the 12th person in the UK to receive a living related transplant and initially it seemed like a success. I imagine that my parents thought he was now stable and so it would be OK to have another baby and so I arrived.

When I was little, I always knew there was something wrong with Steven’s liver. If we were play fighting, I would always be told ‘be gentle!’ So it was something I was aware of but didn’t really worry about. You don’t as a child. I didn’t go to school asking the other children does your older sibling need blood tests? Or does your older sibling need so many medications in the morning?. Children don’t have the emotional capacity to know how serious something is, they just know the family is sad in that moment and how to repeat what you’ve told them but not fully understand what any of this means. At least I don’t remember being as worried as I was when I was older. I didn’t worry or understand why my brother was having a third liver transplant aged 11 while I was only 7. I didn’t realise how serious Steven’s health problems were until I was a teenager.

Feeling excluded

One thing I do recall, however is feeling left out because of the huge amount of attention which had to be given to Steven.  My parents were aware of it and at one stage I was assigned a play specialist by East Anglia Children’s Hospice to encourage me to talk about my feelings at age 9. I also remember my Aunt Helen (who had to take care of me while my mum and brother were at the hospital and my dad was at work all week) going into school to ask the teachers to stop asking me about Steven and not asking about me. Of course now I understand why they did – the teachers knew Steven and genuinely cared about his progress  But people were forever asking me either how Steven was or how mum was. No-one ever asked how I was.

I distinctly remember a spell of nine months when I was aged 12/13 when Steven had to spend a long time in hospital. This was one of the hardest times in my life. It was around the time before he had to undergo a fourth liver transplant. There were complications, and a number of interventions and operations took place in the hope of preventing the fourth transplant. Obviously he was seriously ill and mum had to be in hospital with him the whole time. My mum is an amazing lady and because of this had a great network of friends who all wanted to help her and were happy to have me to stay. Of course as a stroppy adolescent I couldn’t see this. I remember feeling like I was just being bounced around from one place to another and I made my feelings clear. Every week I was told by my mum on the phone they would be home next week, the next week would come and I would get the phone call to say they needed to stay longer. Week in and week out, I became more and more angry.

I was so angry with mum and with Steven.  I was jealous of him and all the attention he got from my parents and everyone else. And of course he was jealous of me because I could go out and do all the things he couldn’t. I now understand this is completely normal, siblings fight but due to the circumstance this was sibling rivalry to an extreme. I found looking back as a teenager, I was very focused on myself and what I needed and not the ‘bigger picture’ I would lash out and say things like ‘you wouldn’t care if I wasn’t here’ to my parents but what I was trying to say is ‘I feel unnoticed and I’m scared’. If I argued with my parents I got attention and their concern for two minutes. Teenagers are ‘selfish’ but they need to be in order to discover who they are, siblings of ill children may find not who they are but who they are in relation to their ill sibling. I wanted and needed my mum, but she couldn’t be there and she made the best arrangements she could with people who really did care about me. I am forever grateful to those families who took care of me and did their best to make me feel a part of their own families. I now completely understand why she did what she did. I would do the same and I’ve apologised to her.

Dark thoughts are normal

By the time Steven had his fourth transplant, I was 15 and my parents were able to involve me more. I could stay at the hospital; I didn’t feel pushed out and the anger I had felt as a younger teenager wasn’t there. Of course, it was replaced by worry. Over the years I did suffer from anxiety and depression, and I think I knew what was wrong with me – I just didn’t know how to fix it.

It was only when I went to university and moved out of the family home while Steven recovered from his 5th transplant aged just 21 that I realised how different my growing up experience was to other people my age. No one else I met was having to deal with this kind of stuff. But even then, Steven’s situation affected my choices.  I deliberately went to University of East Anglia, not far from home so I could get back home or over to Kings College Hospital in an emergency. This proved to be the right choice as during my second year of university Steven required a sixth and to be his final liver transplant. Despite this, it was 100% a good thing for me to get away and not just be Steven’s sister.

Despite his considerable health problems, Steven and I had always had quite a jokey, teasing relationship. Steven had a very dry sense of humour which would be particularly evident when he was in hospital. After his fifth transplant though, Steven changed. He developed encephalopathy and he became very angry. It felt like it wasn’t Steven anymore and on dark days I often thought it would be better if he wasn’t here. To all young people who feel like that about a sibling who is ill, you’re not a bad person – this is normal. Don’t punish yourself for having dark thoughts.

Coping with loss

By Christmas 2020, while home from Portsmouth University completing my Master’s degree, Steven had received six liver transplants in total and despite his failing health which had caused him to abandon his own university course, he was not strong enough to undergo a further transplant. His body simply could not take any more and the decision was taken to move him to palliative care. I understood the implications of this but still carried a bit of hope. Steven had always defied the odds. He shouldn’t have survived this long but he was still here, so although logically I should have been prepared for us losing him in February this year, emotionally I wasn’t. It was still a shock.

When he died there was a big empty space, like a limb had been hacked off. I was so used to being Steven’s sister – it was all I had known. A situation like this consumes your entire life and even though Steven had the ability to drive me mad, his needs were always in my head, whether I wanted them to be or not. I don’t think I ever realised how much Steven was a big part of my identity until he was gone, and I felt completely lost. Putting yourself first may come naturally to others and it’s a healthy thing to be able to do, but even now I’m still learning how to do this.

It’s been quiet at home since he died. When you’re racing around at 100mph it’s only when you stop that you realise what you’ve been doing. Also, because my mum and I were keen to keep things as ‘normal’ as possible for Steven in those final months, we were very much ‘keep calm and carry on’. We didn’t want to get upset in front of Steven, that would have  freaked him out. So we put on a brave face which was the right thing to do for him. But it’s only when you don’t have to do it any more that you realise how draining this can be.

Looking to the future

For all those years I hadn’t allowed myself to be selfish before, but since Steven died, I realised it was time to think about what I really wanted to do.

After my degree, which was in psychology, I did a Masters in Criminal Psychology and Intelligence and am about to start work as a police officer while completing a degree in professional policing. It’s a bit nerve-wracking but also exciting. Steven knew that this is what I wanted to do and he was very proud. And as I had told him , let’s face it – I was always going to do something involving a blue light!

Steven was passionate about raising awareness of childhood liver disease, CLDF, and the importance of organ donation and Mum and I have promised to continue that. In addition, I feel my experience could be of benefit both to the parents of children with liver disease and their siblings.

My message to parents would be: Make your other children feel important, especially when they are teenagers and being completely unreasonable. If they are being horrible, it’s because they want your attention. I remember thinking ‘if I disappeared, no-one would notice’ which of course was nonsense but children in that situation don’t think logically. Even if it’s just an hour conversation just about them once a week, it really will make a difference and they will remember and see the effort you made when they are older.

And my message to siblings would be I see you. You are not alone, and you are loved. Please talk. Talk to anyone and share your feelings. Feelings are so important, and you are so, so special. I would love to hug anyone who is where I was because I completely understand.

I’m happy to chat to any sibling or parent and I can be contacted through CLDF.

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