How has liver disease affected your family?
Every family where a child has liver disease knows about the difficulties which can occur when one child is in hospital and routines are disrupted.
But do these disruptions have any lasting effect on sibling relationships? We spoke to some families for their views.
Leonna whose 12 year old daughter, Trinity, had a transplant when she was just six weeks old, feels that the impact of her liver condition on the family is escalating. “My younger daughter Harriet, who is ten, knows that Trinity has to go to hospital lots, needs meds, and needs more care, but she just sees it that mummy loves Trinity more,” says Leonna. “She’s even said ‘I wish I was poorly so I can get treats from the hospital’, which is really sad. I find it exhausting and I’m not sure how to deal with it.” Harriet admits that having a sibling with health problems can be difficult: “I sometimes feel like Trinity gets more attention and I feel left out, like sometimes I feel invisible,” she says. Although I feel this way, I love Trinity so much, it’s just a bit hard to show it, she has to go through so much and I want her to know that I'm here for her no matter what.”
Trinity & Harriet
In other families, the impact is less obvious. Louise’s 11 year old daughter, Sophie, has biliary atresia and had a transplant when she was three. The family have always been very open with Sophie and her twin sister, Megan, about Sophie’s liver condition. “The girls have always been close and although Megan would say she doesn’t treat Sophie any differently – and Sophie would wholeheartedly agree - there are subtle things I notice,” says Louise. “For example, if Sophie has a hospital appointment which causes Megan some interruption or inconvenience, Megan never complains. When they were together at primary school, Megan would report back on any incident such as Sophie getting hit in the tummy with a football, whereas Sophie wouldn’t even mention it. And when they returned to school after the first lockdown, Megan was worried about catching Covid, not for herself but because she didn’t want to pass it onto Sophie. “Megan is a caring person, sensitive to the needs of others and because this situation is all either of them have ever known, we don’t know how much Sophie’s liver condition has to do with that.” Sophie & Megan
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