Until recently I never truly realised the importance of organ donation. Yeah, it’s a tick on the old license but I never stopped to think about what that little tick actually meant.
One year ago my gorgeous little 6 year old niece, Ione Peaches, was diagnosed with Kidney Disease (if you’re medically inclined, unlike me, it’s called Infantile Nephronopthisis). It’s basically a rare genetic condition where the inside of the kidneys don’t form properly. One of those ‘one in a million’ conditions. This came completely OUT OF THE BLUE (how we found out is a whole other story). No one could see it coming, let alone her parents. How can you be relatively healthy (or so we thought) one day, and in the hospital with 2 failed kidneys the next???? It shocked our world.
Each day and each week became more and more scary as we watched as little Ione became sicker and sicker. She had numerous blood transfusions and serious daily handfuls of pills and medicines to stabilise her.
She very quickly had to have a tube inserted into her tummy (a permanent catheter) the width of a hose which measured her arm span so she could have dialysis for 11 hours every night (which is where fluid was flushed into her body to remove her body’s toxins, the job of a normal functioning kidney). This process meant that her parents NEVER got a full night sleep, taking turns to get up to the dialysis alarms sometimes 25 times a night.
Oh yeah and I forgot to mention Ione is the eldest of four kids, so among all of this my brother and sister-in-law were having to juggle toilet training and tantrums with her three younger energetic brothers (UM….so, I am exhausted looking after my two boys...can you imagine three boys and a sick daughter, all under the age of 6! GOLD MEDAL to those two, I tell you).
So the dialysis was literally just buying time, sadly it wasn’t going to cure little Ione. The ONLY thing that was going to come close to a cure was a kidney transplant. The tricky thing is, you just can’t transplant any kidney...it has to be a close match - blood, tissue matching...all sorts of other stuff that I don’t really understand.
My mum (Ione’s Nanna) was a close match and was going through the process of preparing to donate one of her kidneys...so much involved in that process alone, including not being able to work for months after the operation. Sadly, 2 weeks before mum was due to have the operation some key results came through and the doctors said mum’s kidneys were not functioning strong enough and if they took one of mum’s kidneys it would significantly affect my mum’s life.
Meanwhile, little Ione was getting sicker. The dialysis was doing all it could, but it wasn’t enough. She was on the organ donor list...waiting, waiting, and waiting for a match.
It’s an absolutely gut wrenching feeling seeing a darling little girl being kept alive by a nightly machine...in the hope that someone, somewhere is a match, and has ticked that box….and for whatever tragic reason passes away. An incredibly bittersweet thought...someone’s tragic loss, is someone else’s miracle.
It’s an incredibly difficult topic to talk about and an awful conversation to have. No one wants to say goodbye to the people we love. The thought of never having a conversation with or hugging that person again is just unbearable. The thought of organ donation is the last thing in your thoughts when you’ve just heard the tragic news.
At 10:30pm on the 24th of May, my brother and sister-in-law got the call to say they had a ‘match’ for little Ione...they knew the sad reality of what that ‘match’ meant for one family out there...but for them it was the call they were eagerly awaiting.
They immediately woke Ione, detached the dialysis machine from the tubes in Ione’s stomach and rushed to the hospital. They were on autopilot, focusing on their little girl and trying not to get too ahead of themselves. A flurry of doctors and nurses helped to prep her and the next day she was given a new kidney.
It’s hard to process this scenario as an adult, but how do you explain this to a 6 year old. That she has part of someone else inside of her body, and it’s because of that someone else that she doesn’t have to have tubes attached to her tummy, that she can now go to school, she can have a bath like normal kids and go for a swim, and she can now eat whatever she wants. It’s hard to explain that she’ll never know who that person was, their name, where they lived, their thoughts, if they are a kid or if they are old enough to have their own kids. How do you tell someone who you’ll never meet, they saved your life. How do you thank someone for ticking that little box.
The answer to that question is that you can’t. But, what you can do is increase awareness that organ donation changes lives. And hopefully that family who said goodbye, one day will realise that their loved one gave the most precious and most selfless gift anyone can give.
It’s DonateLife Week this week and my brother, sister-in-law, and in fact our whole family are now passionate about increasing the awareness of organ donation, and the importance of it. The truth is, that little tick on your license is only one part of the process, there are two more essential things to do:
1) Join the Australian organ donor register (visit www.donatelife.gov.au) and
2) Have the conversation with your family, after all, they are the ones who have the overriding say about what happens to you when you die.
I write this post with such a heavy heart as I know there is a family out there who is grieving for the loss of their loved one, I am so grateful that person decided to tell their family they wanted to become an organ donor should something tragically happen to them.
To that person, thank you, you will be in our hearts forever, you have given a gorgeous little girl the gift of life - this purple balloon is for you.
There still are so many more people that are waiting for that call. It's staggering that 61% of Australian's don't actually know what the donation decisions are of their loved ones after they die. I'd love you to help Ione and her parents spread awareness about organ donation so more miracles like Ione can happen. Let's get the conversation started!
Click the links below to share this post and spread the word.#endthewait #donatelife
Great article Skye!!! What a strong little super star your niece is. And your brother & sister-in-law.
I have spent many days (& nights!!) as part of the team involved in this process. It is an amazing thing to witness when someone’s life is transformed completely because of the generosity of a stranger & their family. I have held people as they cried & cried in the simple pleasure of passing wee for the first time in years – and in what that means for them in having their health, life & freedom back. It is the best part of humanity & it is why I became a kidney doctor. Sadly Australia has a really low rate of organ donation – but it has been improving over the last few years thanks to initiatives like Donate Life.
Skye is right – talk to your family, it is the most important thing to do, as they will be making the decision when you are gone.
It’s seemingly a no-brainer, of course we should all have Yes on our drivers license as well as registering with Organ donations Australia
So why don’t people???
If you haven’t – PLEASE do – after all , you don’t need them when you have died.
I hope as much of mine as possible is used to help as many as possible.