Explaining transplant to our 5 year ol... - British Liver Trust

British Liver Trust

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Explaining transplant to our 5 year old daughter

Spamberella profile image
Spamberella

So it’s been a little while since I’ve been on here and I thought that I would give you an update. It might be a long one though!! Hubby’s health has been deteriorating since christmas which ended up with me calling an ambulance on 21st March as he become very confused, quite unresponsive and had trouble waking him after a long nights sleep. His ascites had come back with vengeance due to becoming resistant to his diuretics and he was extremely uncomfortable, breathless and lethargic. He had AKI, hepatic encephalopathy and his blood chemicals were all to pot. It was an absolutely terrible 7 days before the drs managed to get him stable and sort the multiple problems he had going on. 14 days later he was fit enough to go for his appointment for assessment at Queen Elizabeth hospital Birmingham which is where he is currently. Waiting for the outcome on wether he will be suitable for transplant this Friday. But we have a very inquisitive 5 year old little girl and she is asking a lot of questions. Are there any appropriate books, information or tips on how to explain transplant to her. Any help or experience much appreciated

Katie x

17 Replies

I am not sure about books maybe the Admins and Nurses here could advise of any. If she is very inquisitive could you show her a basic picture of the human body inside and show her the stomach etc.. and how the liver likes good foods and drinks and it keeps them to give to the heart and bones etc... to keep them healthy and then it sends the rest to wee or poo and move onto the transplant from there?

Spamberella profile image
Spamberella in reply to jazzjam

Thankyou for your fab idea. We have also just got her a Drs bag and nurses outfit, she loves to play drs with her babies and teddies. We also have the game Operation as she’s fascinated with anything to do with how the human body works. It’s just trying to find the right words/way to explain to her about daddy without it being too scary for her. Thanks again for another great idea, I shall give it a go x

There is a book called 'Rudy Gets a Transplant' by Stacy Raye Waibel - it is more about kidney transplant though and Rudy is a poodle so don't know whether it's any good.

I am sure a book came up for discussion on AIH Facebook page, i'll have another search through and let you know if I find it.Jazzjam's idea is good though, make a game of it, draw round your little one and put the organs in the right place and tell a little bit about what it does. If you say Daddy's one is broken and he needs a new one you could explain it quite simply.

I don't know whether the Children's Liver Disease Foundation might have age appropriate guidance though it might be geared up more for the child being the recipient. You could but ask. childliverdisease.org/

Hope all goes to plan with assessment.

Katie

Thankyou ever so much I shall have a look into this xx

I have a friend who is a fellow liver transplantee.

"Lucy's Liver Transplant" is written by Lucinda Parker Roberts, whose life was saved by a liver transplant, 'Lucy’s Liver Transplant – A Story About Organ Donation' is a children’s illustrated book written to help stimulate conversation in families about the sensitive subject of organ donation and organ transplants. Lucy becomes sick with a rare illness and through a magical encounter learns about organ transplants. Described as a “heartwarming tale” we learn of how Lucy has to face something that most 7 year olds will never go through.

Covering a challenging subject like an autoimmune disease, Lucinda creates a vivid world of entertaining characters keen to help explain the message of organs and organ transplantation.

Written by Lucinda Parker Roberts, with glorious full colour illustrations from the talented Helmut Hernandez V.

It has been written and published on the Kindle format so that it is easily accessible across the world, but Lucinda is working with translators to translate it into different languages so that the story can travel the world. The Kindle revenue will go towards printing costs so that the book can be sent in a hard version to every school in the UK.

Lucinda Parker Roberts is an author, artist and entrepreneur who is an ardent campaigner for increased informed education about organ transplantation at an early age. At the age of 33, she was fortunate enough to receive a life-saving liver transplant after her own liver was destroyed by an autoimmune disease called Autoimmune hepatitis type 2.

This is available on Amazon: amazon.co.uk/Lucys-Liver-Tr...

This might help. I also see that if you happen to have a Kindle, this book is free to download.

Good Luck

Richard

Lucinda Parker Roberts
Trust9 profile image
Trust9Administrator

Hello, We have a few copies of a book called 'Mending Mum' by Julia Rawlinson. It comes from the Addenbrookes Liver Transplant Association.

I will messsage you to get your details and will pop in the post.

Trust9

Spamberella profile image
Spamberella in reply to Trust9

Thankyou ever so much, I’ve just messaged you x

Ewife profile image
Ewife in reply to Trust9

Please could you send details to me too? I would like this book.Thanks

Trust9 profile image
Trust9Administrator in reply to Ewife

I have sent a PM to you for details .

Trust9

I knew i'd heard of others but couldn't locate them.

Glad others remembered their titles etc.

All the best, Katie

Big thankyou to everyone for giving me some ideas on how to explain the situation to our little girl. It’s hard enough for us grown ups to get our heads around what’s happening let alone a 5 year old. All your input is much appreciated. I’ll keep you all posted re transplant decision on Friday xx

My son is 12 and has struggled with anxiety a bit. We have told him about the operation, but only from the positive point of view. He doesn't know any of the risks. He unfortunately witnessed his Dad have his osophogeal bleed, so knows that he is seriously ill. He is just excited that Dads going to be better one day! His school have been really helpful, they know the situation and have offered a weekly check in with his favourite teacher. If you can speak to school or any carers that should help support you and your kids through the coming months.

Spamberella profile image
Spamberella in reply to Ewife

Aww bless your son, witnessing his Dads bleed must of been terrifying for him. I’m not surprised he’s suffering from anxiety. I witnessed my husband having an oesophageal bleed and it was horrific, I still have nightmares about it now and it happened 4 years ago. Luckily our daughter was only a year old at the time and was oblivious to what was going on. The sad thing is that Daddy being poorly, tired and with a sore tummy is all she’s really known. We have 2 older boys who were 13 and 16 when my husband was first diagnosed with cirrhosis and they have seen him go from a strapping, fit, 16 stone solid fun loving Dad full of energy who loved his footy to 4 years on a shadow of himself. Our boys definitely struggle with seeing him so ill but we are all very much excited and hoping that one day he will be better and get the gift of a new liver. School have been amazing and very supportive too.Wishing you and your family all the best, take care

Katie x

Ewife profile image
Ewife in reply to Spamberella

Its hard being the one having to support your kids through the emotions as well as care for a sick husband. My other 2 kids are 19 and 17. I was out when my husband started the bleed just him and the kids at home. He messaged me while my daughter was on the phone to the ambulance and I was able to get back home before paramedics arrived - but the guilt I feel at not being there and the kids seeing it is immense. Do you think my mind is still processing this and coming to terms with the trauma of that day? Just recently since we have been coming out of lockdown something has just snapped a bit inside and I'm really struggling with anxiety. Sorry to offload onto you but find it interesting that you still have nightmares about it.

KR

Xx

Spamberella profile image
Spamberella in reply to Ewife

I don’t mind you offloading at all, whatever helps. I struggle with a whole raft of emotions whilst trying to make sure the kids are ok, looking after a poorly husband, pretty much running the house and working part time. Sometimes life just feels like a constant juggling act to be honest. Hubby’s cirrhosis was brought on by alcohol but he wasn’t your typical alcoholic (whatever’s that is)We used to run pubs. I was a landlady and had a liquor license at the age of 20 so booze was part of every day life for us. He worked hard, was the life and sole of the party, was involved in lots of sports, a great and caring dad and husband but he would love to drink pretty much every day until one day, completely out of the blue he had his bleed. Which then led to him being hospitalised for a month. He hasn’t touched a drop in the 4 years since, thank goodness. But his health has slowly deteriorated. I do feel angry and resentful that this has happened, I really miss the man he once was and the family life that we used to have but also I do love him immensely and know that he carries an enormous amount of guilt for what has happened . Some days are good and others not so but the one thing I do know is that he is a great man, father and husband and I know that this is going to be a long road but we’re doing it and we will hopefully get him back and fighting fit. So if you need to offload, scream, shout, cry or just talk please don’t hesitate to do so. I think that we’re all just winging our way through this so grab onto anything that helps. You take care my lovely.Katie xx

Hi Katie. No advice about talking to your daughter but my husband has just been discharged from the QE so they would have been in at the same time. I am trying to gather a support network so will start following you. If I can help in any way just send me a message.. take care xx

Spamberella profile image
Spamberella in reply to Whip_pet

Hi there. Hubby is currently still in QE having his assessment after being in Gloucester royal hospital for 2 weeks prior to assessment. We’re keeping everything crossed for a good result on Friday and hoping that he can return home all being well.I’d be interested in your support group. Any bit of info, support or experiences I can gather is a bonus. I’ve found that knowledge is key for me.

Katie x

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