To ask you to 'Think the unthinkable' TW child death and organ transplant

[SunsetandCupcakes]

www.bbc.co.uk/news/uk-england-tyne-63080520

Please read this, I had already had the conversation when my son unexpectedly ended up in ITU which made the decision much easier.
If my loss could save another child and another parent then I knew it was something I wanted to do.

Despite this I didn't know that this was a decision that brave parents made after the death of their child in labour or as neonates, I appreciate this whole topic doesn't bear thinking about but if we can, I think we should.

Comfort can be gained in the darkest of spaces, for me my pain was going to be with me forever, I drew comfort from the thought another family could avoid it.

I am very pro organ donation. I'm on every register I could find. While I'm alive, everything I can live without is up for grabs. When I'm dead you can have it all. I don't want my body to be played with by artists/scientists but you can have my organs, my eyes, my face, my limbs. I would donate anything internal from DS, but I couldn't change his appearance, I don't think I could ever let go of him tbh I don't know how people find the strength to bury their children. Bury me with him.

So yes, I think organ donation is an incredibly amazing thing and wouldn't hesitate.

I’m on the register.
Would donate family organs too if it came to it.

I can't think about it for any length of time but we would donate organs. But like PP I feel funny about the prospect of anything external being taken It's not logical I know but the thought of it really upsets me, even though I'm happy for everything of my own to be taken. God I hope it's never a decision we have to make.

The whole thing completely and utterly freaks me out and the thought of my children having parts removed makes me feel sick……
but, I am a donor and would also allow use of my child’s organs if it came to it.

I agree with you... It would be a horrible situation to have to make that decision, but you are right that to consider it in advance would be a wise choice. We would all wish for life saving help to be there if our child needed it, so we should consider how we could help others if the worst happened.

Aren't we all automatically on the donor list now and we have to opt out instead of opting in?

I agree.

I have friends whose daughter tragically died in a road traffic accident when she was a teenager. She had a donor card and the parents agreed to honour that.

I can't remember now how many other people benefited from donated body parts but from memory it was about 17. I know her parents took some comfort from that.

I saw this article this morning and will be discussing with DH at some point. I'm on the donor register myself and would like to think I could allow my DDs organs to be used if, god forbid, that situation ever arose.

But then I started thinking about it more and the thought of having her taken from my arms, which presumably would have to be very soon after she died, nearly made me weep. Then it occured to me if I got to hold her again after would she be noticeably lighter? I know that's a very selfish reason not to do it but it's the question that popped into my head.

You should still register your decision by carrying a donor card.

Also, and most importantly of all, you need to have a conversation with your family, because family can override your decision, and are more likely to do so if your wishes aren’t known.

Around 50% of families refuse donation if the discussion hasn’t been had. That reduces to just 10% if a person’s wishes are known.

If your daughter needed an organ, would you accept one?

We are far more likely to need a transplant than to be in a position to donate our organs. But receiving that transplant is reliant on someone else deciding to donate a loved one’s organs.

It’s a personal decision of course, but the fact is anyone could be told they need a transplant at a moment’s notice. And in order for that transplant to happen we have to rely on the selflessness of someone who is facing bereavement.

I had it on my birth plan that DS’s organs could be used in the event something went wrong in labour.

I would still allow it now he’s older, absolutely. But he has heart defects so may not be a viable donor.

I love him with every fibre of my being. If a little part of him could live on, and spare another family grief, then I want that for him.

I’m on the list but if I go before dh does, I know he won’t honour that.

He has already told me. He can’t bear the thought of someone else having my heart or other organs.

We had a big argument about it but he still refused.

It would be the same with the kids I think. I would agree and he wouldn’t.

I tried the whole “if you would accept one, you should donate too” but no.

Thank you for your gift of life, OP.

My dsis was an organ recipient. That gift of life gave her 9 extra, precious years. In that time she got her dream job, won a place in the GB Paralympic squad, and got to know my 3 eldest dc. I will be forever grateful to the donor family.

My DC all signed up for bone marrow donation as soon as they were old enough to do it. They are mixed race and they responded to an appeal related to a particular need.
My late son was on the organ donor register (as are we all) and even if he had not been, I would have consented to whatever the doctors thought would be appropriate. He was a kind and generous young man and I know he would have approved. Unfortunately it was not possible, due to the circumstances of his death.
IMO we should address this question when all is well and we have time to have sensible conversations about it.
I have a family member who is a recipient and every day I am thankful that in the midst of their tragedy, a family gave their consent to save another life.

If a death is somehow troubling or traumatic, then surely it would at least be a consolation to know that another person has benefited from a transplant? There is no good reason to refuse. As an adult, if I thought anybody close to me might refuse to donate my organs after my death I would be very, very angry - it is not their decision to make, given that I have already said it's what I want.

I absolutely agree with all the points made as to why you would donate, I guess I am imagining a scenario where if DD were to die in my arms, I don't know in all honesty if I could physically hand her over immediately which I suppose is what would be required?

Absolutely no hesitation here. If any bit of me can help someone else then they can have what they want - certain bits are buggered but you are welcome anyway! 😂 I'm very pragmatic about death - the alternative is perfectly usable bits that could save or change someone's life will rot in the ground or be turned to ash. Same goes for my DD. To be able to do that for someone else is a wonderful thing.

I can’t imagine burying or burning organs that might be of used to any other human being on this planet. It ought not to be allowed.

When my son died we weren't able to donate his organs (SUDI so there had to be a post mortem and police investigation).

I wish our tragedy could have helped another family, I think it would have given us some comfort.

There is a good FAQ here that includes information on what happens after, its written in a factual but sensitive way. Your loved one is returned to you afterwards, any wounds will have been closed and dressed and cosmetic damage repaired. The transplant coordinator will be able to arrange for you to have time with them, in the case of a young child or infant this can include use of a cold cot/cold bed to enable the family to have more time.

www.aftermathsupport.org.uk/get-support/organ-donation/

I always thought that one of the most tragic things about a recent high profile death. Was that his organs could possibly have been donated. His parents may have found comfort from that in the future. I know several people who had to make that decision and they all find comfort from it.

I also think that if you have given consent by being on the register. Relatives should not be able to override that decision.

My ex husband and son's father has had 6 extra years so far due to him receiving an organ transplant.

It's been the best gift any of us could ever have asked for.

OP

For anyone who feels their family may override their decision, I would recommend you take out an advance directive in order to ensure your wishes are carried out.

On some level I agree that relatives should not be allowed to override the decision of the deceased, but it’s difficult, because a family is faced with the generally sudden death of a loved one, and then to be told that they will be taken and their organs donated in line with their wishes which the family may not have been aware of, is far more likely to increase any trauma.

That is why the family have to make the final decision. Because it is the family who have to live with it, and the family who have to say goodbye without the ability to be there while the life support is withdrawn.

My best friend had an extra 20 years thanks to a transplant. Thank you OP. 💐