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With time running out to find a donor for their bub, Nelia’s husband stepped in.
Here, Neila Hay, 43, tells the story in her own words.
Looking over at the little girl in the bed opposite, the horror must have been written all over my face.
Her skin was bright yellow and there were tubes snaking from her body. Is this what my boy’s facing too? I fretted.
Lachlan had been diagnosed with biliary atresia, a rare disease that meant bile didn’t flow from his liver. It was the same condition the little girl across the ward was battling.
At nine weeks, Lachlan had needed an op to remove his bile duct and gall bladder. Then surgeons had attached his small intestine directly to his liver to allow the bile to flow through his body that way. It had all gone well, but when he was five months old, Lachlan began to deteriorate.
Now he had to come to hospital every 10 days so doctors could monitor his liver levels. There so often, I got chatting to the little girl’s mum, Jaynie. She told me her daughter’s name was Alexis, and she was just a few months older than Lachlan. She was waiting for a second liver transplant, as the first one hadn’t worked. ‘I’m terrified I’m going to lose her,’ Jaynie told me.This is going to be our future too, I thought.
It was a scary time for Lachlan’s dad Chris and me. When we got together, Chris had a son Bailey, 14, while I had Stacey, 17, Cameron, 15, and Nicholas, 12, and they were worried too.
Despite everything, Lachlan always had a smile on his face. Then, just before he turned one, we got the news we’d been dreading.
‘Lachlan needs a new liver as soon as possible or he might not make it to his second birthday,’ the doctor said.
Breaking down, Chris held me in his arms. ‘We’re going to put Lachlan on the deceased donor waiting list,’ he went on gently. ‘You’ll get a call if one comes available.’
Discussing it afterward, Chris and I knew we couldn’t just wait around to see if a donor came up. During our time at hospital, we’d seen bubs pass away because they hadn’t got a transplant in time. ‘I want to get tested to see if I’m a match,’ Chris said.
By now Alexis had received her own transplant, and knowing what I was going through, Jaynie was my rock. ‘What if we never get a donor?’ I cried. ‘You have to keep positive for Lachlan,’ she said. My phone didn’t leave my side as I waited for the call.
After an agonising four months, my mobile suddenly started buzzing in the middle of the night. A donor!
Hands trembling, I called Chris, who was on a night shift and we arranged to meet at the hospital. Grabbing Lachlan, I jumped in the car and started driving. This is it! I thought. But before we reached the hospital, my phone rang again. ‘I’m so sorry, Nelia,’ the doctor said. The donor wasn’t a match for Lachlan after all. It was a devastating blow.
‘We are not losing him, we can’t give up,’ Chris said through tears, back home.
Thankfully, a few weeks later, we were told Chris was a match and the operation was scheduled. Surgeons planned to take the left lobe of Chris’ liver and transfer it to Lachlan. Then Chris’ liver would regenerate naturally. With any surgery there are risks, so doctors warned me there was a chance I could lose both of them. But I couldn’t let my mind go there. Losing my hubby and my baby was just unthinkable.
Saying goodbye before the op, Chris hugged me tightly. ‘We’re both going to be fine,’ he reassured me.
Amazingly, nine hours later, a doctor confirmed it had been a success. And when I saw Lachlan, I couldn’t believe it. He already looked better and his yellow skin had faded.
Just a few days later, he even started crawling for the very first time. ‘Good boy!’ I cried.
As the years passed, we were so grateful Lachlan, now seven, could enjoy life like any other kid.
Jaynie and I regularly chat on the phone with updates on Lachlan and Alexis. We call them transplant buddies.
They’re two of the lucky ones, but there are so many others who are desperate for a transplant.
I still have pinch-me moments when I think how differently it could’ve gone.
If Chris hadn’t been a match, we could’ve lost our boy while waiting for a deceased donor. That’s why I’m urging everyone to join the that’s life! 60 Seconds to Save a Life campaign.
Having your name on the transplant register is so important. You too could save a life.
Registering is easy and takes around 60 seconds – all you need is your Medicare number.
To change a life, go to donatelife.gov.au/thatslife
Read more in this week’s issue of that’s life!, on sale now.
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