- When Joanne Dowling, 38, was 18 weeks pregnant, doctors noticed her bub, John, had a rare heart defect during a scan.
- After being welcomed into the world, John underwent multiple heart surgeries but they were not enough.
- Joanne was told little John would require a transplant to save his life and at 18-months old, he found his perfect match alongside another little boy.
Here Joanne, 38, tells her story in her own words.
Watching our son, John, then two, leap across the lounge, my heart beat out of my chest.
‘Be careful!’ I reminded our little daredevil, as my husband, Thomas, then 39, chuckled.
A real firecracker, John’s always on the move, running, jumping and climbing on everything. You’d never know that his heart was once a ticking time bomb.
I was 18 weeks pregnant when a doctor noticed my bub had a heart defect during a scan. Further testing revealed our boy had truncus arteriosus – a rare condition where the two main arteries in the heart, the pulmonary and the aorta – are joined.
‘The condition can be fatal if left untreated,’ the paediatric cardiologist explained.
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I was desperate for answers, but we’d need to wait until he was born to take action. Although frightened, I knew I had to stay strong for our boy.
‘You’ve got this little one,’ I whispered, cradling my blossoming belly.
At fortnightly ultrasounds, our baby’s growth and development were closely monitored. Thankfully our boy was developing well.
Then in January 2023, at 37 weeks and one day, John was born weighing a healthy 2.4 kilos. After I had a quick cuddle, doctors whisked him off to intensive care where he underwent testing.
‘You’ve got this little one.’
They found that his heart was struggling to push oxygenated blood around his body, instead forcing it into his lungs.
At five days old, he was wheeled in for open-heart surgery.
During the gruelling 11-hour op, surgeons tried to use his own tissue to widen the artery, but sadly it was too small.
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The next morning, John had a second open-heart operation, where an artificial conduit was placed inside his artery. Being artificial, it wouldn’t grow with John, so he’d need multiple surgeries to replace it as he got older.
Afterwards, doctors had to leave his chest open for four days until the swelling had gone down.
Seeing his tiny body snaked in wires, I felt so helpless. ‘Mummy’s here,’ I whispered.
‘He needs a partial transplant.’
After 32 days recovering in hospital, our boy was stable enough to come home. But at five months, he was back to have the stent replaced, after his heart started to fail, resulting in a cardiac arrest.
By that November, the pressure in John’s heart was increasing. To prevent him from going into heart failure again, he had more surgery to widen the stent.
‘I’m not able to widen the stent any further. He needs a partial transplant,’ the doctor said, explaining John would need a pulmonary artery and valve tissue from a donor.
The following May, he was placed on the transplant list, as his team worked to find a perfect match. Two months later, my phone rang.
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‘We’ve got a match!’ the specialist said, explaining John would be part of a domino procedure where another patient, who was receiving a new heart, would donate their healthy artery and tissue to John.
While I was so grateful our boy had been given a second chance, my heart broke for the family of the deceased donor.
The next day, John, then 18 months, was taken to theatre where, over eight hours, surgeons inserted his new pulmonary artery and valve tissue.
‘Keep fighting sweetheart,’ I kissed his forehead after in recovery.
The next morning, Thomas and I joined a support group for transplant families. There we met Katie and John, whose son, Teddy, then three, had received the aortic valve from the same donor as John.
‘Our boys are heart brothers!’ Katie beamed.
The boys were in adjacent rooms in the ICU. So a few days later, once John was able to breathe on his own and sit up in bed, we introduced him to Teddy. Becoming fast friends, they bonded over their matching scars.
Each morning the boys would race to the other’s room for a cuddle. And by day five, John was running down the hallways.
‘Did you put in a supercharged part?’ I joked to his surgeon.
Eight days after his op, John was discharged. Back home, he needed 15 different pills each day, including anti-rejection medication which he’ll need for the rest of his life.
‘Thank you for saving our boys life’
Seven months later, I got another call from the hospital. And a month later, we were given a very special opportunity – to meet the little girl who’d saved our boys’ lives.
At the hospital, John and Teddy wrapped each other in a big cuddle. Then we met Hend, then 11, who’d donated pieces of her old heart to help our sons.
‘Thank you for saving our boy’s life,’ I cried to Hend and her parents.
It was touching to see a normally shy John hugging her, almost like he knew how special she was.
Six months on from his transplant, John was back to his energetic self. When not cheekily leaving crayon masterpieces on the walls of our home, he was fearlessly climbing up the big kids slide at the park.
‘That’s your super scar,’ we tell John, now three, when he’s curious about the scar on his chest.
‘You’re like Iron Man,’ his siblings, now 14, 12, 11 and nine remind him.
We keep in touch with Teddy’s parents and the boys often get together. And we know that no matter where life takes them, they’ll always share an unbreakable bond.
While we still have a long way to go in his recovery, we’re so grateful for everyone involved in John’s journey.
Thanks to a life-saving donation, our boy’s future looks incredibly bright.
