Family support: Hi I hope someone can... - British Liver Trust

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Family support

Lozzy0777 profile image
6 Replies

Hi I hope someone can help. A friend is on the liver transplant list and has 2 small children. His partner is quite unsupportive and hasn't really explained anything to the children and he doesn't really know what the right thing is to say.

Is there any reading material / films out there for young children that explains the liver transplant process. He found one book but felt it was quite scary for young ones.

Thank you in advance! :)

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Lozzy0777
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ballie52 profile image
ballie52

When my husband got his first transplant my children were very young..I just explained to them that their daddy needed an operation to feel better..I felt they didn't need to be given any stress at such a young age...looking back I'm glad I never put them through any stress as it really can affect them and cause distress as I found out when my husband needed another a few yrs later..I told my children the second time and wished I never explained as it caused them a lot of worry and distress knowing how sick he was..I wouldn't have explained the details if I knew the distress it caused my children the second time round.

jenniwren profile image
jenniwren

it might be worth taking a look at the children's liver disease foundation website. It is aimed more at sick children who might need transplants but will also explain the transplant process in a child friendly manner. As ballie52 says though, it might be better for the children of the details are left very vague. Xx

RodeoJoe profile image
RodeoJoe

I had a liver transplant last November. I've got two kids 8 and 10. I didn't tell them what was wrong with me, as it was enough for them to know that I was ill and needed an operation. They didn't ask and I didn't tell them.

I really don't think the details are important at that age. In fact I very nearly died but they would never have known. Perhaps it was a massive gamble but they came out of it relatively unscathed bar a few weeks of not seeing me.

I'm not sure they have the mental capacity to fully understand transplant and what is involved. I think transplant although a miracle is quite frightening for a young child.

So my advice is to play it down, and of course tell them he's ill and needs an operation, but then wait and see if they ask questions.

Also, if he's on the transplant list he should have a a social worker type person he can speak to, I wonder if they can help?

Hi I am not sure how you would play this. I too am on the list although as my children are grown up it is not an issue for me. If very young children are involved it may be best to follow rodeojo's advice. Where I have concerns about this approach, is if the worst should happen when would you tell them the details. They have a right to know what happened to a deceased parent. If they discover later on in life that the truth has been concealed they may feel resentful.

All the best .

I think the advice above is sound: children don't need a lot of detail. One issue has not been addressed, however, that of the "unsupportive" partner and it may be that she needs and deserves some support. There is a risk that we ignore the needs of partners but someone who is given encouragement to explore concerns and fears will be better able to support the partner.

Hello 😘 I am also worried about 'unsupportive' partner - I am sure when I went with Rob to all the meetings etc - they more or less said 'you have to be on top of things' to me - as rob wouldn't be able to manage them !!!!! Although what happens to those who don't have partners ????

As for the kids - our boy was 7-8 yrs old when Rob started to get ill and I think you have to go by the 'child' - I told ours 'daddy is poorly' mostly because of the 'HE' - so we had to explain something - also they can see somethings not quite right - why is daddy always in bed ? I would answer whatever questions they have but don't make a big deal about it also be prepared for the 'will he die' question - I told ours 'yes there is a chance that daddy might die but we are going to hope that daddy gets better and we can play football again' - which was fine for him - now we get 'will he die at every admission/appointment etc - so have to be quite diplomatic 😘😘😘😘😘😘 good luck xx

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