Does anyone have any ideas they can offer as to when and how to discuss their child's liver disease with them?

My daughter has Biliary Atresia, portal hypertension with grade 3 oesophageal varies. Sophie is 3 years old and has a twin sister. With recent visits to KCH it seems she is headed for a transplant and I want to know if anyone has dealt with discussing these things with their child, if so how?

The girls have started to ask things themselves, whether it be around her scar or her visits to hospital etc. I feel I need to prepare us all for the future and wondered if people had ideas they could share that may help.

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  • Hi "Lou Tub"! It's Alice! I think we're heading the same way with Bertie. I'll start this reply but might have to stop and continue later- boys are free-range. We've been talking about poorly livers, Bertie's meds, why we have to go to the doctor/hospital since Bertie was very little and able to talk, and have carried on the conversation with Bobby (2 1/4) who knows Bertie has a poorly liver, "helps" with meds etc. Nearly a year ago Bertie was very nearly put on the transplant list so I mentioned one day, casually over breakfast, that the doctors would start looking for a new and better liver for him. His reply, "Ok. Can I have some more porridge?" I had to smile despite being very anxious and havuing a head full of ifs and buts and hows! Then I worried about him asking where it had come from. I think the answer will be dependent on his age if he asks the question, which he may not but I wanted to be prepared. It maybe a very truthful but gentle explanation about what happens with organ donation, it may be an angel or someone who doesn't need it any more, we'll have to see if and when that happens. Got to go. Bobby tumbled! X

  • Our son had liver cirrhosis since he was born and had a transplant when he was 12 (now18). We have always been open and honest with him and his siblings about his medical conditions. Obviously using language he could understand. I found taking this approach worked well for the whole family.

  • Me again. I wanted to make sure Bertie was aware of things before children at pre-school noticed his scar, swollen tummy and big veins on his abdomen- he's fine when people ask.

  • Our son has biliary atresia and is now 18, we too have always been very open and honest with him and his brother. I feel that as a family we openly discussed his medical condition from a very early age and for all of us this worked well. I think it is just as important for them to understand as it is for us as parents, it's amazing how they deal with this.

  • Hi there

    Our son had a transplant almost 9 years ago at 9 months old so he has no knowledge of life before transplant, meds, 3 monthly blood tests etc. He has a twin brother and a younger twin brother and sister (hope that makes sense!).

    The only fuss he ever created about was going for bloods, quite understandably. We always told him what he wanted to know and when. He began to question why he needed to have an operation when he was 5 (5yearly biopsy) so that became a time when he knew a little bit more.

    Both him and his brother grew up knowing that he was having his tac to keep his new liver working and that his own liver that he was born with stopped working properly. We looked at pictures and showed him photos and told him stories - funny and sad about the whole time.

    While he was always very aware of the way he got his new liver (an operation scar is a bit of a give away) he never asked where it came from and tells overly-nosey people it is a shark bite. Last year, when he was 8 and a half, I felt it was time for him to know a little bit more about where his liver had come from, he was always very open with peers and friends outside school that he had had a transplant, but I knew that he was unaware what exactly that entailed and I didn't want someone coming up to him in the playground and telling him before he knew himself. While he was at BCH for his yearly check up he had a lengthy session with the play therapist who talked him through from illness to why he needed a new liver and where it had come from. She was fantastic and he listened to her, whereas because he hadn't initiated the conversation I think if we had told him he would probably have brushed us off and told us to go away!

    He was very matter of fact, but a tiny bit repelled that he had, to be blunt, part of a dead person, inside him. The whole of the rest of the week he was very, very quiet - just processing the information I guess. I just told him that if he ever had any questions he could just ask, whenever he liked. He has a special folder and book that he sticks photos, mementoes and writes down questions for when he goes to see the docs for check ups. He has never once asked a question since!

    The best plan is to go with what your child wants and needs to know when they want and need to know it. It is remarkable how matter of fact they are - most of them know no different and so it is therefore quite normal.

    Hope that helps!

  • Hi, just to give a slightly different perspective I am a child who was born with Biliary Atresia. I am now 30 and very well. I had my Kasai at 6 weeks and my transplant at 17 years old.

    I honestly don't remember my parents ever sitting me down and explaining it all to me I just feel that I have always known. The doctors at King's have always been excellent at giving info and answering even the most random questions even when I was just a kid.

    I have 3 older brother who were 2,5 &8 when I was born and they have always been involved with everything and are probably experts on my condition themselves by now!

    There is no doubt that having a child with Biliary Atresia can take a toll on families and especially siblings but we have come through remarkably well and we still end up talking medical issues even over dinner.

    Another reason to always be open and encourage your child to understand about their condition is that you will probably find that very few doctors outside of the specialist centres have any real clue about your child's condition. I regularly explain my medical history to doctors and need to be clued up so I know if they are taking everything they should into consideration when treating other (more mundane) medical issues.

    Finally the upside of your child understanding what is going on is that they probably won't develop a fear of doctors and hospitals. A few of the doctors who have treated me since I was a baby are now personal friends and I consideer King's my second home.

    Hope this helps you.

    Eleanor

  • I think things have improved since I was born, I'm 54 now and I never remember anyone talking to me about it when I was a preschooler and I can certainly remember my 4 year old surgery but obviously not my baby surgery or any cholangitis infections inbetween. I just remember being told a little older by my Mother in a very serious voice that I would become ill again sometime in the future and I just remember feeling a black cloud over me most of my childhood. When I was 21 and got ascities I never even knew i could become so ill or what the condition was but than my specilist was not very forth coming. So great to hear that you have all managed to include the whole family, I doubt my brothers know the details of what is wrong with me and although the family is supportive to a point ,I could never have a detailed conversation about my illness and I have had 7 surgeries and will soon have number 8. I totally recommend that previous letters and the way they have dealt with the issues.

    Vickie

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