We have had the conversation about what we want to happen to our organs when we die.
Have you thought about it?
Have you discussed it?
Have you registered as an organ donor?
Have you thought about what would happen to your child's organs if they were to die before you?
That's the tricky one isn't it?
We are all happy to make a decision about whether we want to register to be organ donors but who wants to talk about the possibility of their child dying before them.
Most of my day to day interactions are with other mothers who, like me, know that they will outlive their child or mothers who are mourning the loss of a child. This became our life on 22nd December 2004 when Daisy was born.
We know that Costello Syndrome is a life limiting syndrome, but because of medical advances the life expectancy of children diagnosed with the syndrome has increased dramatically and the oldest surviving person with the syndrome is 40. However Daisy, as we know, is very different, she also has complete intestinal failure and many other complications which make her very atypical for the syndrome and reduce her prognosis. We accept this and this is why we live life to the full.
Some children with intestinal failure can receive a transplanted small bowel, stomach and other organs, this gives them a chance to come off TPN and live a normal life.
For Daisy this is not an option, she has too many complications and so a small bowel transplant is not the complete solution for her and may not get her off TPN.
Our daughter cannot receive transplanted organs. But we have still had the conversation and registered to be donors.
And not only Andy and I, our children have made it very clear that they also want to donate their organs when they die, whenever that is. They have also made it very clear that that is their wish should they die before they reach the age of 18, in other words, we are to respect their wishes and donate their organs should they die before adulthood.
As they have told us "well when we are dead we won't need them anymore and it would be better if they are used". Our children are better placed to say these things because they really understand the impact of organ donation, they know children who are alive today because of donated organs and they also knew children would would have been alive today if they had received donated organs in time.
Let me give you some hard facts:-
In most cases organs donated by children are given to children to ensure the best match in size
Because there continues to be a shortage of donors in the UK, particularly of paediatric donors, some transplant surgeries use organs from other countries in Europe.
You are more likely to need a transplant than become a donor
A donor can donate a heart, lungs, two kidneys, pancreas, liver and small bowel and can restore the sight of two people by donating their corneas
The age of people who have donated organs after their death has changed in the past decade with more aged over 50 and fewer younger donors. Older donors are less likely to be able to donate as many of their organs as younger people, as some organs may become less suitable for transplantation as people age. But organs from people in their 70s and 80s can be transplanted successfully
The number of people needing a transplant is expected to rise steeply over the next decade due to an ageing population, an increase in kidney failure and scientific advances resulting in more people being suitable for a transplant
Surgical techniques, such as splitting livers, have meant that a donor can help more patients than ever before
If any of my children were in a situation where they needed a donated organ, I would be desperate to know that they would receive that organ in order to give them a chance of life....
Let me introduce you to one of Daisy's friends. She's called Izzy. She's 7 months old in this picture. We met Izzy and her family in the neonatal unit, just a few days after Daisy's premature birth. Izzy was born with a rare syndrome and a condition called Biliary Atresia. She was on life support, desperately in need of a donated liver that would cure the biliary atresia and give her the chance of life and the chance to grow up
It was touch and go and at the eleventh hour, when hope was fading, Izzy's parents got the call and a matching donor liver was available.
Thanks to a family's brave decision to donate their loved ones organs on death, Izzy is here today and she's living life to the full together with her big sister she loves horseriding and playing with her dollies and her dog, Jingle.
Here is another friend of Daisy's. She's called Poppy. We met Poppy and her lovely mum Kim and little sister Coral when we were all staying at Great Ormond Street. At the time Daisy had just started on TPN and the prospect was looming for Poppy also.
Poppy has had a tough past few years with monthly trips into intensive care with line infections and sepsis, over and over when all hope was lost, she has defied the odds and bounced back, her will to live is incredible. Nine months ago she was put on the transplant list to receive a small bowel, liver and pancreas - a five organ, multi-visceral transplant.
Unlike Izzy, I can't post a happy, post- transplant photo.
Poppy is still waiting.
At the moment she is in hospital, she's desperately ill, her only chance to be a little girl again and grow up with Coral is a transplant. Every day Kim wakes up hoping that this is the day, the day they get the call, the day that her little girl gets a chance of life again and they can take the pause button off and just be a family. But that call has not come yet, and Poppy is living on borrowed time. Because the bottom line is that there are more people on the transplant waiting list than there are registered donors.
And this is why we all need to have the conversation and think about what we would do.
If the unthinkable ever happened to any of my family, I would want to know that they helped another person live.
This post is dedicated to all the brave families who made the decision on the hardest day of their lives to donate their loved one's organs so that another person could live.
To sign the organ donor register go to