We were waiting for another child to lose their life to give our son a second chance. Life and hope and unimaginable pain colliding.

November 30 is Thank You Day, a day of appreciation dedicated to those who make organ donation possible.

I’ll never forget the moment my now-husband told me about his heart.

Not in the “this is how my heart feels” sense, but his actual, physical, beating heart. 

Because it used to belong to someone else.

It took a good few moments for it to sink in. To avoid exposing my ignorance, I didn’t ask any questions. I knew next to nothing about heart transplants, and given that it was only our third date, impression management was in full swing. So, after saying something akin to “wow”, I pushed it to one side and stayed quiet.

When I arrived home later that night, I turned to Google to seek answers to the many questions I was too afraid to ask. Down a very dark rabbit hole of shocking stories and terrifying statistics, I arrived on his doorstep in tears as the harsh reality of what he had been through hit full force. 

He told me not to focus on statistics and to definitely not turn to Google for answers. He had learned this lesson the hard way, and anyway, he was defying the odds more than 20 years on.

And in those 20 years he had cycled the length of New Zealand, photographed prisoners in Africa, snowboarded for a season in the US, surfed Piha, played in multiple bands, and lived in Copenhagen. He was living an adventurous and full life – a life that honoured the incredible gift he had been given.

For the next few years of our relationship, the only reminders of his heart transplant were the multiple medications he took day and night and his six-monthly checkups.

Until our second son was born.

He was a healthy, happy baby until just before his second birthday, when all of a sudden, he wasn’t.

The first sign of trouble was when he vomited after eating an ice cream at the beach. We didn’t think much of it at the time, but that ice cream triggered a cascade of symptoms. He was lethargic, out of breath and couldn’t hold any food down. We took him to the GP several times over the following week. And after our fourth visit and still no answers, we took him straight to Starship Children’s Hospital.

That evening he was diagnosed with dilated cardiomyopathy. Our darling boy was in severe heart failure.

To say our world was turned upside down in a moment is an understatement. The heart condition my husband was diagnosed with at 19 wasn’t, in fact, caused by a virus. It was a familial, underlying condition. How did we not know?

The thing is, research in genetic conditions have skyrocketed since my husband’s diagnosis 30 years ago. So, the possibility of his heart condition being genetic was never on our radar. 

Following the bombshell of our baby boy’s diagnosis, we hunkered down for a long stint at Starship. The hope was that medication would stabilise his heart enough to safely go home. We were told that if there was no improvement, the worst-case scenario would be a heart transplant, the same traumatic surgery that rocked my husband’s world at only 19. 

Our little boy was only two years old. And unfortunately, it was the worst-case scenario.

Because he was so young, he needed to go to the Royal Children’s Hospital in Melbourne. Yes, we do heart transplants in New Zealand, but back then, only in children older than four. This is partly due to our population size, but also due to our shocking donor statistics. To put it bluntly, if we stayed in New Zealand, he wouldn’t survive the wait. So, with only five days’ notice, we upended our lives and relocated to Melbourne for the next 11 months.

I know I learned early on to not focus on statistics, but when driving home a message such as organ donation, they are hugely important. So, on those statistics…

• If you donate your organs, you can transform the lives of up to 10 people and save the lives of seven. It’s important to remember that organ donations are not only for life-or-death situations. There are countless people with chronic conditions whose quality of life can be improved beyond compare by transplantation of healthy organs and tissue.
• There are more people waiting for a life-saving organ than what will become available through donation.
• New Zealand’s per million rate of organ donation is very low compared to most other countries. In Australia, it’s 19.43; in the US, it’s 48.4; and in New Zealand, it’s only 12.31.

For some children on the waiting list, including our son, a young donor is their only hope. Hearts and lungs, in particular, need to be matched by size because of the limited space inside the chest.

The shortage of suitable donors means children waiting for an urgent heart transplant will wait two and a half times as long as adults.

A UK study shows parents are less likely to donate their child’s organs for lifesaving transplants, which limits the number of organs available for children on the transplant waiting list. The study showed that 48% of families supported organ donation for a relative aged 17 and under, compared to an average of 66% of families supporting donation for older relatives.

Our little boy waited an excruciating eight months for the right donor heart to become available. And when I say excruciating, I mean it. We were waiting for another child to lose their life to give our son a second chance. Life and hope and unimaginable pain colliding. A heavy wait and a heavy weight to carry. 

A phone call at 3am, and the wait was over. 

Thankfully, the transplant was a huge success, and after a rocky first year of contending with every possible virus (thanks to his immunosuppression), our darling boy is now thriving. He loves riding his bike, swimming at the beach, playing with Lego, and building huts with his big brother. He is living the adventurous and full life that any little boy deserves. Like my husband, the only reminders of his transplant are the medication he takes twice a day and his six-monthly check-ups.

I pinch myself every day. How incredible is modern medicine? And every day, I think about the wonderful family who made the decision to donate their child’s heart to give my son a second chance. Amid their grief and pain, they thought about someone they had never met. Their selfless decision gave our little boy life – a life that we are determined will honour the gift he has been given. I can only hope and pray that somehow, in some way, the knowledge that some good came out of their loss gave them a sense of comfort in their grief. And maybe it still does.

Choosing to be a donor is straightforward for many (I was an elective donor before I met my husband), but what many people don’t know is a simple tick on their driver’s licence is no guarantee. Their family can overrule their decision. 

That’s why Organ Donation New Zealand asks you to discuss your wishes with your loved ones now, not when the unthinkable happens and they’re facing that decision overwhelmed by grief. And as painful as it is, I would go a step further and discuss what you would do if you lost your child. Would you donate their organs to give another child a second chance? 

And when you do have that conversation, please think about my darling boy and husband and the wonderful lives they now live. 

All thanks to the incredible decision made by two families in mourning.