Thursday 28 February 2013

Difficult But Life Saving Choices

Have you added your children to the organ donor register? Its not an easy decision. I can understand that.

Being responsible for yourself, that’s one thing. Saying, hell yeah, if I die you can take the lot, but your child, that’s a different matter! Yet I think it is important to think about it.

What if, dare we even think such a thing, it was my child????? Yes, what if it was my child that needed a heart? They have weeks to live unless some other poor family have to experience their own tragedy and that family then agree to save the life of another child by allowing their child’s heart to be donated. Deep within their own grief they have to make the difficult selfless decision to help another family in ways that I’m sure no one can imagine unless they’ve been there.

Couldn’t I just wait and ‘cross that bridge’ if it happens? Its not a nice thing to consider the death of your child at any time but when they are healthy and still so young...though I am not sure whether I’d be able to make that kind of decision at the point it was actually needed, when I was so full of grief and emotion. So it is a decision I’d rather face now when I am clear-headed.

From what I understand, you still get the final say at the time of the incident anyway but having known I thought it was the right thing to do at one point it may prompt me to think of the reasons why and to make the difficult final decision to go ahead with the donation(s). Of course, it wouldn’t be the decision of just one of us parents, it would be a joint decision so, if one parent was wavering, again, having discussed it and agreed to sign them onto the register could help.

I would then hope I got some comfort knowing that the death of my beloved child was not completely in vain and that part of them will live on.

I wanted to add Callum a few years back but when I first broached the subject with Stuart, theoretically he was for it but wasn’t ready at that point to add his name to the register there and then. It then came up again a couple of nights ago and Stuart asked if the children were on the register. I said they weren’t but I wanted them to be and he agreed that he also felt they should. So I did it, quick, before either of us changed our mind.

Now I just hope we are never in a position where we need to follow that decision through or where we ourselves are facing the prospect of losing our child should a donor not be available.

Maybe signing them onto the register is still a step too much at this stage but at the very least I urge you to have the discussion, if appropriate, with your partner/the other parent to your child(ren). You may be thinking the decision is simple in your head but are you both on the same page? I’m pretty sure you wont want to be having a deep debate on the subject at the critical hour…or minutes.

Of course, I wouldn’t sign up my children if it wasn’t something I was prepared to do myself. I am already a registered organ donor, bone marrow donor and as of this week, I’m now allowed to give blood (you need to wait 6 months after giving birth) so will be finding my nearest blood donation centre right after publishing this post.

After mentioning on Twitter that I had registered Callum and Millie on the Donor Register, a Follower pointed me in the direction of @TobysGift and through that Twitter account I found the blog TobysGift’s Blog, written by a Mum, Sally, who has already had to face this heartbreak and now promotes and supports organ donation. Perhaps you might like to take a read if you are thinking about organ donation.

For more information, to register yourself or your children, please go to the NHS Organ Donor Register or click on the picture at the top of this post.


  1. It's a very difficult decision. I lost a baby when I was 6mths PG. Now, his organs wouldn't have been any use for donation but I was asked, as part of the post mortem, if they could remove the organs just for medical reasons etc. (I'd said yes to skin being taken to check he hadn't passed away due to genetic condition for DNA profiling, but couldn't bear the thought of him being cut up and parts removed. I understand that this is somewhat different to removing organs for transplant, but still, it was my baby being cut up. So I'm on the fence a bit. I'm an organ donor myself but not sure how I'd feel about removing parts of my child. In theory, as a Hindu, I should believe that the body is just a vessel and as his soul was freed at death, he will/was reborn.

    I think you've made the right choice for now, but at the time of god forbid anything happened, I'm not certain you'd be able to follow through without a lot of soul searching. Hope there's nothing untoward in this comment x

    1. No nothing untoward at all.

      I think I've said to you before but so sorry for you having to go through the hurt of losing a baby.

      I can understand your feelings and there is no way of knowing how I'll feel at the time if something did happen.

      I asked my mum about it as she lost a baby at 6 weeks old. At the time she was horrified and said no to organ donation but in the weeks that past she said she regretted her decision as she then worried if something should happen to one of her other children (my sister mainly, the twin to the baby she lost) and what if they needed an organ, she'd hope for someone to make a different decision to what she did.

      She said she thought it was a good idea to add them to the register now as, like I say in the post, it may help to remember why I did when my emotions are too raw to think openly.

      Hoping I never have to find out though.

      I like the Hindu philosophy and have similar (spiritual but non-religious) beliefs.

      Thank you so much for commenting so honestly on what must be a very sensitive subject for you.

    2. Sorry, just reread my reply, I don't mean in any way to criticize the decision you made at that tragic time - I just wanted to share my mum's comments. No one should feel guilty about a decision made at that time and I really do understand that it can be so difficult to agree to something on someone so tiny. My mum shouldn't feel guilty for her decision, it was right for her at that exact time as it was for you.

  2. I put Emma on the register when she was a few months old. In a way, I felt rather mean doing it, as if I was anticipating her death somehow - illogical, I know.

    I'm glad I did it there and then, when I first thought of it, I hadn't thought about it again until I read your post. Well done for bringing it to people's attention.


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