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Tuesday, 13 May 2014

why my children are on the Organ Donor Register

According to the NHS Organ Donation website there are currently 6979 individuals awaiting a transplant.

Six thousand nine hundred and seventy nine people.

I'm on the Organ Donor Register, as is Mr Manley.  And, perhaps more controversially, so are Noah and Petal.

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After giving birth I was very clear in my mind that if we lost our baby in circumstances that meant their organs could - potentially - save the life of another baby or young child, I absolutely wanted that to happen.  Both Noah and Petal were on the Organ Donor Register within a couple of weeks of their birth.

I would like to think that knowing my child's organs had been donated would bring some level of solace.  A recognition of something positive coming out of something so utterly heartbreaking.

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Through conversations with medical professionals that we met via Smiler, I had learnt that it was standard operating procedure not to approach families of babies or very young children, as this was considered too difficult a subject to raise at too emotional a time.  The double tragedy of this of course is that a week, or two; a month, or two; or even a year, or two later, those parents might come to wish they had been offered the opportunity to donate their child's organs or tissue.

More recent conversations with hospital staff reveal that attitudes have changed, partly because of staff training which has increased confidence in asking such difficult questions of parents, but they also cited the increase in public profile of the Organ Donor Register as a contributing factor.

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We tend not to shelter Noah (11) and Petal (9) too much from the realities of the society - and the world - in which we live.  I like to think that we take the opportunities presented routinely through news reports and the like and use them as something of a springboard to start a discussion with the kids.  Topics we've covered at the dinner table include same sex relationships; bullying; religion; alcohol and drugs; terminal illness; school exams; and, most recently, organ donation.  Obviously some elements have been touched on only very briefly, at a level appropriate for their ages, but at least it provides a foundation to be built on as times passes, and it has furnished them with some of the vocab associated with these topics.

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I talked with Noah and Petal yesterday afternoon, about whether they wanted to remain on the register or whether they wanted their names taken off - I explained that they could make their own decision, and that we would respect that.  Petal asked a few (very sensible and mature) questions, along the lines of How do they make sure you're definitely dead and would they be able to save her organs and keep them in case Smiler might need them.  My throat constricted at the love of a little sister, and I held her tight for a moment and closed my eyes.

Rather than me giving them the answers, I encouraged Noah and Petal find them for themselves, so they googled organ donation and found the NHS  Organ Donor Register website complete with a comprehensive Q&A section.  An excellent resource, by the way - I highly recommend checking it out.

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Have you ever spoken to your children about organ donation?  We live in a society where illness and death are well established taboos, and discussing such serious grown up issues with children might be viewed as macabre.  I found Noah was intrigued by the practical science side of things, while Petal focused on the people element, wondering aloud why a baby might need a new heart, and what the world would look like to someone who hadn't seen clearly for years.

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As they shared their thoughts and questions I was incredibly proud of them both, and the way in which they talked to one another and to me - in fact, Petal was relaxed enough to cut her toenails as we chatted (a fab multi-tasker already!).  By the end of the discussion both Noah and Petal asked me to update their details, having decided that they wanted to stay on the donor list.  I reminded them that if they changed their minds at any point to let me know - I wanted them to know that they have control of this decision.

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Six thousand nine hundred and seventy nine people waiting in hope for a transplant.

Not all of them will get one.

But the more people who register their wishes, tell their loved ones and start discussions with their children and parents and siblings and friends and neighbours and work colleagues - the more conversations about the issue of organ donation, the more chance that some of those six thousand nine hundred and seventy nine people might get the organ they need.

It's Dying Matters Awareness Week,
so please, think about starting that conversation today.

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5 comments:

  1. This is a wonderful thing to do. I too am on the register. After my oldest daughter died suddenly last year we donated her organs to four recipients. We offered this, we weren't asked. I've not put my other children on the register yet, but I'm not sure why. I've been blogging about this too. Thank you for a positive and informative piece!

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    1. I was touched by your moving posts about your beautiful daughter Abi. I hope that you can take comfort from the fact that your choice to donate her organs has probably saved lives. Thank you for reading, and for commenting too - its very much appreciated.
      Take care
      Lucas

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  2. It's amazing that there are that many people on the donor list. I must really get myself registered. Haven't thought about registering my children, I would like their permission first, but I suppose they are a bit young at the moment.

    Brilliant article lovely x x x

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    1. Thank you Laura, for reading and taking the time to leave a comment. I was shocked by how many people were waiting for transplants. I think getting yourself on the Register is one of those jobs that you mean to do but it never gets to the top of your to do list - there's always other things more urgent! Even if you don't get round to ringing up, if you tell the people around you what your wishes are I guess that would be a good start - I was on the phone with them for literally five minutes, and that was for four of us, so it really doesn't take long. I know exactly what you mean about wanting your children to make their own choice, but if it's a choice that you would make in that incredibly difficult situation, maybe it's worth putting their names on and then discussing it when they are at an age where you feel confident that they can make that choice - that's how I did it anyway!
      Thank you for coming by Laura, hope to see you again!
      Take care
      Lucas

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  3. An incredible article and beautifully written. Recently I heard from a mum whose child is awaiting an organ and she is raising awareness about child donors. I must confess, I had firstly never thought about this issue and and secondly, I had not realised children on the waiting list would indeed need child donors with child-sized organs. Seems so obvious to me now, but I'm sure I'm not the only one who didn't realise this. So let's start the conversation of child donation… NHS website and the charity, Live Life Then Give Life (www.lltgl.org) has more information.

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