When a child has liver disease, it affects the whole family. Here 20 year old Hassan, whose sister, Habiba, now 14, has had multiple liver transplants, describes his experience.
I always knew my youngest sister was unique in the sense that she spent many months of her early life in hospital. The exact details, however, were unknown to myself and my other three siblings. All we knew was she had some sort of operation in the first few months of her life, this was not questioned by any of us. This may give the impression that we were in some ways, disinterested but this could not be further from the truth. If we had been told the full story about Habiba’s condition, the full effect of the situation would not have resonated with any of us: from my youngest sister to myself there is only a six-year age difference.
Looking back on how this affected her school life, as siblings we used to joke about just how much school my youngest sister would miss. It seemed that this condition she had was taking priority over all else, I remember her missing at least a couple of days a week for well over two school years. The effect of these constant appointments was that the rest of us would have to go to my grandparents’ house, if it was an afternoon appointment, which is not ideal as every child needs normality in their life. When the appointments were in the morning, the situation upon arriving home was not the same as when there was no appointment. My mum would be somewhat preoccupied with the large amount of medicine my sister was prescribed, though she tried her best not to make it seem so. As the years went on, after pressure from the extended family, my dad took on the role of giving the medicines to my sister. I cannot fault my parents as they were always there for all of us.
The main anguish was yet to come. My sister would stay in hospital weeks upon end, even if she contracted the smallest virus. It was during one of these prolonged stays at Birmingham Children’s Hospital, I found out quite recently, that the medical professionals realised her liver was failing and she would need a transplant at the earliest possible opportunity. The quite vivid memory I have is my grandmother picking up the phone and upon putting it down her eyes becoming a waterfall. My relatives were called to the house and told the news in the front room, whilst we were left in the living room. Despite it not being spelt out for me, I knew what was going on – unless a transplant donor was found my sister would only have a few weeks left. After a time that seemed to be an age to me (just under a month), I was finally taken to intensive care to see my sister. Upon reaching the hospital, I was told that this was her third transplant in a matter of weeks and the doctors had hope that this liver would be accepted by her body. That was five years ago and fortunately it was a success.
Fast forward to today and the underlying fundamentals are very similar. My sister still has a lot of hospital appointments which require a now secondary school student to take days off. The extended stays at the hospital have declined in occurrence, however there is always that feeling of ‘what if’ whenever she even contracts even the slightest cold. The amount of medicines that she requires for her liver daily are in double figures, as a family we will forever be indebted to the NHS – for their wonderful employees and the fact they provide the medicines free of cost. One major change has been my sister, she is now the average teenager; chatty, wanting to stay out with her friends and always on her phone. This sense of inadvertent normality has benefitted the whole family: me and my siblings are now told the full story whenever my sister has a health scare. My grandmother has always told me, as the oldest sibling I should always be there for the rest of my family.
The help of CLDF throughout the whole period, coming onto a decade now, has been invaluable. They provide the clarity my family needs, in terms of how to help a child who has a liver condition. CLDF have given the family a lot: from providing information for my parents at the beginning to being there for emotional support. For my mum especially, having CLDF around has been a lifeline; she has been given advice and tips on how to not let having a child with a liver condition take over your life. CLDF has been brilliant raising awareness within the wider society. They organise an annual fundraising event, Big Yellow Friday the first Friday every March, where they collect money to support children around the UK who live with liver disease. They also run an awareness campaign, Yellow Alert, to promote early identification of childhood liver disease amongst GPs and other medical staff and guidelines on what action to take. This is something which means a lot to my family as we are all too aware of how important it is for any problem to be detected as early as possible.
Photo caption: Hassan is pictured with his sister, Habiba