Childhood liver disease – a sibling’s perspective

At CLDF, we often say that every child’s liver journey is different. The same can be said of the brothers and sisters of those young people who are affected. Today we are privileged to hear from Doroti who writes movingly about the impact her brother’s liver condition has had on her.

My name is Doroti Polgar, I am eighteen years old, and I am the older sister of Kristof, who was born with PFIC (Type 2) and received a liver transplant twelve years ago. As a sibling, much of my childhood has been shaped by the experiences surrounding my brother’s illness, yet equally as much by how I and those around me dealt with these experiences.

It is often said that childhood liver disease affects the whole family, but I feel that those most frequently forgotten about are siblings. After all, a seriously ill child is obviously at the forefront of both the parents’ and clinicians’ concern. This leaves siblings, in most cases, feeling secondary in both environments that come to shape their everyday lives: home and the hospital. This, in turn, influences experiences in a child’s other prominent environment, school.

As with the whole of this blog, this observation is informed purely by my personal experiences, and I hope that through sharing, we (parents, patients, siblings, clinicians, teachers, charities) can create a new environment in which siblings feel valued, understood, listened to and empowered to speak out; an environment that may only be beginning, but one that is important for us to develop.

In light of this, in the following lines, I will share my experiences as an older sibling, how my perspective has changed growing up, some advice for other siblings in a similar situation, and some ideas on how we could support siblings in the key environments I’ve already mentioned.

The early years

I was three years old when my brother was born and diagnosed with PFIC (progressive familial intrahepatic cholestasis). My early years were shaped a lot by language.  In order to access the necessary medical care, our family moved from a small town in Hungary to Birmingham’s city centre. I began primary school a few months later, not knowing any words in English. Eventually, as my dad was my brother’s full-time carer, I helped with translating at some of the hospital appointments. Here, I think it’s important to mention that siblings are often a lot more aware of what is happening than is assumed, therefore making language a particularly shaping aspect of any sibling’s life.

We learn words that our peers don’t know, such as phlebotomy and immunosuppression, perhaps even the names of  immunosuppressant drugs, and definitely some abbreviated terms such as ITU. Inevitably, sometimes, we even Google them. We understand. And we shape questions from them, the most common one probably is this: why didn’t you tell me?

Parents, out of love, often try to hide a lot of what is happening. I really appreciate and understand this, but some things can’t be hidden. From my experience, it is harder to not know and have to attempt to figure things out than to be told directly. Honesty is important. Seeing a parent being honest about a situation may also provide chance for siblings to feel that they can also be honest about how the situation is impacting them, therefore I believe we should encourage this within families, no matter how difficult it may be.

The transplant

Days before his third birthday,  my brother received his liver transplant. At the time, I was six years old. In the lead up to his transplant we received two calls, however both potential donor livers were ruled out as not being a suitable match. During each call, I stayed with family friends, as my parents rushed to the hospital with my brother.

I think it is important to mention that for siblings, it isn’t out of the ordinary to stay with family friends or stay longer at after school clubs, nevertheless my most prominent memories from those few calls were the night-times: when we were no longer playing and all the distractions were gone. When I noticed that the room I was staying in wasn’t familiar, or that the people who make our house a home are away. I also noticed that people most often asked me how my parents were, or how my brother was doing, which I of course answered the best that I could, however the one perspective I could have answered most accurately about was my own – but I don’t recall anyone asking about that.

I think all siblings, at some point, feel a sense of loneliness, and these night-times and absent questions are definitely an example of that for me. Because, after all, most six-year-olds are afraid of the dark, and I was one of them. I missed my parents and worried about my brother.

Soon after the transplant, I remember shopping with my mum to buy him a teddy, which I placed on his bed as I visited him in ITU. After this, I was allowed to visit often, and the memories from the following weeks are particularly good ones: we played board games, drew pictures for the other children on the ward, visited the hospital playground, celebrated his third birthday, created balloon elephants out of nurses gloves and returned to the Ronald McDonald House each evening with one of my parents. I believe being able to see what was happening and how my brother was recovering created a sense of comfort.

Therefore, honesty was again a defining thing. I’ll always remember how my brother’s consultant included me in discussion at his appointments and complimented my handwriting on the yearly ‘thank you’ and Christmas cards. Something as simple as acknowledging the sleepless nights early on, asking how they’re doing and allowing siblings to see and be a part of what is happening at the hospital may be more important than it is often assumed.

School

As I mentioned earlier, experiences of siblings can come to shape their experience of school in different ways. I have come to understand that many siblings struggle at school, especially due to often balancing caring responsibilities that might be required at home. In this instance, it would be important for teachers to provide additional support, to allow flexibility with deadlines, and for parents to ensure that the school is aware of these circumstances.

In my own experience, however, I used school (subconsciously) as a way of almost ‘proving’ that I was also worth being heard. I got involved in every extra-curricular activity, volunteered for every event, and set myself high expectations in terms of grades. Reflecting on it now, I made time for everything apart from myself. This made my experience of secondary school quite lonely but in a different way: most of my interactions consisted of saying ‘yes’ to whatever came next and listening to my peers when they were upset. I really wanted to understand and help everyone that I could, but this led to me often exhausting myself in the process of trying to make sure that everyone else had someone to talk to.

My experience of Sixth Form, however, was an incredible one. I learnt that I can be heard even if I don’t get involved in everything, but by focusing on one thing that I truly love (for me, this is writing), and that I can listen to and help my peers whilst also listening to myself.

For any siblings reading this who might resonate with my experience of school, my only true advice would be to remember that the highest achieving thing you can be is kind: to others, but also to yourself. Give yourself a chance to find something you love, don’t be so hard on yourself when you don’t reach your own high expectations, and don’t be afraid to ask for support (teachers can be amazing). Your kindness will speak for itself.

The teenage years

This year, our family celebrated the twelfth anniversary of my brother’s transplant. As I reflect on these 12 years and how many incredible experiences we’ve had, I also reflect on how my perspective as a sibling has changed as I have grown up.

One thing I believe siblings become particularly good at is concealing emotions and learning to solve problems for themselves. This was the case for me, and I had a habit of somewhat dismissing and belittling any problems that I came across. A clear example of this was when I, at ten years old, was diagnosed with arthritis.

I focussed on the fact that it isn’t life-threatening like my brother’s illness was, and concluded that it therefore wasn’t worth ‘wasting’ anyone’s time for. The only emotion I recall showing was frustration that anyone would question that I was ‘okay’. I also, much later, struggled for a while with health anxiety.

For any siblings who relate to anything I’ve mentioned here, remember that you’re not alone. I’m going to talk about how creativity and sport might be a good way to help with this soon.

The repression of emotion I think becomes the hardest during the teenage years, as we grow to fully understand everything that has happened, as well as others’ stories. We also grow more aware of our sibling’s perspective on their own illness and they become more aware of ours. I remember talking to my brother recently about how lucky we are that he has remained well for so many years. It is something we appreciate a lot more now that we are older.

Empathy and expression

The last and most important, thing I want to talk about is the happiness that being the older sibling to my brother has and continues to bring me, and how grateful I am for it. He is my best friend. He inspires and makes me proud every day.

Two of the most beautiful things that I’ve gained as a sibling are empathy and imagination. The two come hand in hand, really. I’ve always felt that I need to keep my brother safe, and sometimes the only way I could do that was by imagining a world of our own: a world where there are no limits, only fun. We’ve always looked for joy, and we’ve always known that it’s down to us to create it. This feeling of responsibility, that I believe siblings share, also gives us a lot of empathy. We become the children who stand up for other children; the ones who feel sad when they see someone sitting alone at lunchtime, and who always try to make others feel included. We are also often incredibly creative and resilient. And we need more of that in the world. It needs to be noticed and nurtured – we need a place to express all of these positives as well as the worries.

For me, this place is writing. I’ve found it requires a wonderful combination of imagination and empathy, and it has allowed me to express my emotions and stories freely.  Most recently, I had the opportunity to perform a poem I have written titled ‘Dear Justin’ (A Letter To My Brother’s Organ Donor) at the opening ceremony of the British Transplant Games, which was an incredibly humbling and beautiful experience.

For other siblings, this place for expression might be sport, art, music, or something else. The most important and immediate thing we can do is encourage and support siblings to find whatever helps them to express themselves and realise that they are valued and heard. It could make such a difference to siblings’ experiences in all the examples I’ve mentioned.

I want  to thank CLDF for the opportunity to write about my experiences (and to you for taking the time to read it). I’m so happy that the sibling perspective is being spoken about.

Let’s keep talking. Let’s keep listening.

We’re very grateful to Doroti for sharing her story and would love to hear the views of other siblings of children and young people with childhood liver disease. If you (or your child) would be happy to share your story let us know at press@childliverdisease.org. 

CLDF is here to support the whole family. If you would like support for siblings of a child with liver disease please get in touch with us at families@childliverdisease.org