I just finished reading an article about a little boy teetering on the edge of death and the unthinkable steps his parents had to take to save his life. I’m so taken back by the story that it takes me some time to compose myself as I wipe away the tears.
I’m sure you also read the same article this morning and you too are taken back by it, but your first thought is “this is something that happens to other people, it just wouldn’t happen to me”.
I would normally think the exact same as you, except the story I just read is in fact about my family, my husband, my son and of course me and it actually happened to us.
Charlie was born on the 15th December 2013, a healthy baby boy with five fingers and five toes weighing in at 3.5kg. Happiest day of my life!!
That happiness was short lived. Not long after Charlie's birth he was diagnosed with a rare liver disease called Biliary Atresia. A life threatening disease caused by blocked bile ducts that results in toxins and waste to build up and damaging the liver beyond repair.
Within a matter of days I went from being a mum of a baby suffering from “colic” to being confronted with talks of corrective surgery and an inevitable liver transplant.
Doctors hoped that they could treat the symptoms at least until he was one so that he can receive all the vaccinations before transplant. And, so it was, Charlie was officially activated on the liver transplant waiting lis on the 17 Dec 2014. I awaited that date with as much excitement as when I found out I was pregnant with him.
We had hopes of a quick resolution to Charlie’s pain, but we had to wait, in fact we waited on the transplant list for a seemingly endless six months. Our lives were set around Charlies feeding times, via the Nasal Gastric tube. His strict medical regime, constant blood tests, Albumin infusions and Dr. visits. We feared that Charlie could catch a cold from another baby, in which case if he developed fever we would be taken of the waiting list. So we became more isolated. Going on holidays was not an option as we could get the call “any minute” or he may suffer complications and we had to be close to hospital just in case.
Life revolved around the phone and making sure every “private number” was answered or accounted for.
On Monday, 4 May 2015, the unthinkable happened!! As I was putting Charlie to bed he just doubled over and started projectile vomiting fresh blood, a result of liver disease complications. I will never be able to wipe that image from my mind!
We rushed to hospital and the next few weeks that followed still reply in my mind in slow motion. The worry and shock on the Drs faces as they tell me that my Charlie is in an induced coma, that they only just managed to stop the bleeding, that they can not guarantee they’ll be able to do it next time. Charlie spent two weeks on the national list waiting for the first available liver.
The three weeks preceding the transplant, he had three bleeds. His last bleed was so severe that they had to transfuse him with 60% of his blood.
But most importantly we never got THE call.
Our only option to save Charlie was a living donor transplant and I was a match. Our transplant was booked for May 26th.
I had a million thoughts running through my mind as I kissed Charlie goodbye on the evening of the 25th. He was in ICU and really struggling.
Will I ever see him again? Will my liver come in time? Does he know how much I love him?
My story has a happy ending. My liver was a good fit and Charlies fast post transplant recovery was surprising even to his doctors.
But we were extremely lucky!!
Before you say it, I am not brave, I’m simply a mum who in a very unfortunate situation had a little bit of luck on her side.
I heard many parents say “I would do the same for my child”. But what if you could not? What if with all your good intention you were not a match?
If you or your loved one were in ICU with only days to live, would you take an organ to save their life or yours? If you answer yes, then you should register.
You may not be as lucky as me and be able to donate yours.
Believe me when I tell you that none of us are shielded by that invisible cone.
It can happen to you too!
So please sign up with Donate Life and let your family know your wishes.