My second child, Ashford, came into the world as a very relaxed baby. But four weeks after he was born, our world was turned upside down.
What appeared to be a cold at first eventually led to Ashford’s health declining, and by three-months-old he was having real trouble breathing.
One day his lips had turned blue and I rushed him to our GP. The emergency department diagnosed him with bronchiolitis, but my mother’s intuition told me that wasn’t right.
After three days in hospital, an X-ray showed his heart was enlarged. I was relieved they had found the problem and remained calm thinking that he would just need an operation to correct it.
Little did I know, there was no treatment or cure for his condition (dilated cardiomyopathy) and he was experiencing end stage heart failure.
The Royal Children’s Hospital ICU retrieval team arrived to take him to Melbourne and they warned me Ash’s heart could stop on the way there. This hit me like a tonne of bricks. It was the moment I realised that his life was in real danger.
When we arrived in Melbourne, Ashford was immediately placed on life support. I went into a state of shock. I was cuddling him only that morning and now he was fighting for his life. How could I live without him? How would our daughter cope?
Being a registered organ donor for many years, I remember saying to my partner, “If he doesn’t make it, we have to donate his organs.” This was ironic as I didn’t realise at the time Ashford would need a heart transplant.
To buy him time before his donor heart arrived, Ashford needed an artificial heart pump inserted, called a Berlin Heart. The pump would be externally located outside his chest with tubes inserted through his actual heart.
There was a real risk of stroke, brain damage and infection. It was scary but we got used to it. We had to. Other than the transplant, it was his only chance of survival.
At just three-and-a-half-months-old, he was the youngest person in Australia on the waiting list for a heart at the time. There were a growing number of children waiting for a heart, so I fretted we would have to wait even longer.
The first few weeks were tough, but I had to learn to have faith. I was also prepared to accept that we would lose him. We had to cherish every moment.
When Ashford was sent to have a photo with Santa, I broke down in front of people, as I truly feared he wouldn’t make it to Christmas. After three and a half months of waiting, I was at breaking point.
The very next morning, we received the call saying a heart was available for Ashford. I jumped off the bed, waking my partner and screaming that we had a heart! I could hardly believe our luck.
Then I quickly remembered this meant a family out there had just lost their child. I silently thanked them for our precious gift.
We arrived at the hospital and handed him straight over to the doctor who carried him away in his arms. I went home to prepare for his arrival. At 2pm, we had a message to say Ashford’s new heart was beating inside him.
Two days later, he was taken off life support. Our little warrior was finally breathing by himself.
Eight days later we were told we could go home. It was the most joyful day of our lives, coming home as a family of four.
The road to recovery was blissfully happy in the first few months. We treasured every moment. It was overwhelming managing the medication – there were 20 different medications we had to administrate every day.
After focusing solely on Ashford’s journey, we had neglected most of our family and friends and we felt disconnected from society. We had to learn to reconnect.
Ashford’s older sister, Myla, had to grow up very quickly. She had seen a lot of sick children during Ashford’s journey. Sometimes we worry she knows too much for her age but we are immensely proud of her and it has helped shape her into the person she is today.
My partner and I eventually made the decision to separate a few months after Ashford came home, but we were fortunate we were able to uphold our commitment to be a great tag team and continue creating memories with our family.
We celebrate Ashford’s 'heart anniversary' every year and are planning a family trip to Europe next year. None of that would be possible today if Ashford hadn't received his incredible gift of a new heart.
Organ donation saved our family. It taught us so many things and made us realise what’s really important in life.
Naturally, our experience has turned us into passionate advocates for donation. So please, discuss organ donation with your loved ones and ensure they know you want to be a donor. And if you’re willing but haven't signed up yet, make your decision count by joining the Australian Organ Donor Register today.