- When Emma Courte, 32, noticed her weeks old son, Sunny, refusing his bottle she knew something was wrong.
- What was meant to be a quick hospital trip left him fighting for his life.
- Diagnosed with chronic granulomatous disease, Sunny needed a bone marrow transplant to survive.
Here Emma tells her story in her own words.
Let’s have one more?’ I said to my hubby Kyle, then 29, cheekily.
With two beautiful boys, Koa, then five, and Taj, two, I hoped for one more bub to complete our family.
And we’d only just started trying when I fell pregnant.
My third time around the baby block, I was an appointment veteran.
But nothing could have prepared me for the news that was to come.
‘Surprise! You’re having twins!’ the sonographer announced.
Gripping Kyle’s hand, I was in awe of the bubs growing inside me.
‘Two?’ I said, when the shock wore off.
Walking back to the car, Kyle turned towards me.
‘What’s two more?’ he smiled.
Telling our boys later that day, Koa had a question.
‘Do we have to share you?’ he asked.
‘Mummy has plenty of love to share,’ I smiled.
Returning to the hospital for my 20-week ultrasound, doctors confirmed our bubs’ sex.
Two more little boys were about to join our boy band.
And when I was 35 weeks along, our babies Raffy and Sunny arrived, on August 4, 2022, just 13 minutes apart.
After I had a quick cuddle with Raffy, doctors were concerned about Sunny’s breathing, and so whisked both boys off to the NICU.
They spent 17 days there being monitored and given extra care.
Then we finally got the green light to take our beautiful boys home.
‘They’re so small,’ Koa and Taj cooed, scared to touch their little brothers.
With four boys, my heart – and hands – were full.
While Raffy was my good sleeper, Sunny was often restless.
One morning I noticed Sunny had stopped feeding as he normally would.
He refused his bottles and began sleeping for long periods without stirring.
It’s probably a phase, I thought as he seemed fine when he was awake.
Out for brekkie one morning, though, a weird feeling stirred in my belly.
‘I’m going to take Sunny up to the hospital. I think there’s something wrong,’ I told Kyle.
‘Best to go and get him checked,’ Kyle agreed.
I took Sunny to Gosford Hospital and, within 15 minutes of arriving, we had been taken through to see a doctor.
Sunny suddenly stopped breathing in my arms and turned blue.
Scooping him up, doctors rushed in and began CPR on my tiny bub.
All I could do was watch, my heart breaking with worry.
‘Call your husband. He needs to get here as quickly as he can,’ a doctor told me when Sunny was finally stable.
Leaving the kids with my mum Donna, Kyle was at my side 45 minutes later.
A neonatal paediatric team were flown over, so they could be with Sunny when we were taken by helicopter to John Hunter Children’s hospital in Newcastle, NSW.
Only I could fly with him, so Kyle drove to meet us with his dad Brett.
‘Will he be okay?’ I kept asking.
‘We don’t know what’s wrong. We’re doing everything we can,’ was the answer.
Running blood and swab tests, within 24 hours they had news for us.
‘Sunny’s body is in respiratory sepsis,’ they explained gently.
It meant his little body was shutting down.
Heavily sedated and on a ventilator, Sunny battled for five days, while specialists exhausted every avenue.
‘If we leave him on ventilation, it could cause further damage,’ they warned.
It was terrifying. Were we about to lose our precious boy?
‘We’re seeing small improvements. We’re going to try removing his breathing tube,’ a doctor told us.
Then a miracle happened.
To everyone’s amazement, Sunny began breathing on his own.
He was referred to the immunology team, and I was thrilled to see the doctor was a familiar face.
‘It’s lovely to see you all these years later,’ the specialist, Dr Rani Bhatia, smiled.
She had treated me when I was 17 for an immune deficiency that I was diagnosed with at age two.
It wasn’t known to be genetic, but it was worth doing genetic tests on Sunny.
Five weeks later, the results showed he had a different deficiency to what I’d had.
It’s called chronic granulomatous disease, which meant he couldn’t fight off infections like other bubs could.
An infection would lead to sepsis.
A bone marrow transplant could cure him, but anything he touched, or anyone he hugged, posed a danger to his health.
Kyle, the other kids, and I weren’t a bone marrow match, and searching the global database also drew a blank.
There was another option though – a haplo-transplant, where a family member is just enough of a match for
it to work.
And it turned out Kyle was the one!
He injected himself for five days with drugs that prepared him for the transplant, while Sunny had a week of chemo to wipe out his existing immune system.
Then Kyle donated blood, and the stem cells in it were transfused into Sunny.
Sunny needed to be in hospital while his immune system recovered.
Then we stayed with my cousin, Alana, and her hubby, Dan, while Kyle and Mum cared for Raffy, Koa and Taj at home.
It was so hard being away, but on day 89 Sunny’s immune system was stable enough to return home.
And while we’re still waiting for the stem cells in Sunny’s bone marrow to grow, by the 12-month mark he should be in full health.
Going to the local cafe on a Saturday morning – with Koa and Taj riding their scooters – we enjoy coffee and milkshakes, and are making up for lost family time.
The last year hasn’t been easy, but the future is looking bright for our little sunshine, Sunny!
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