'We need another baby to save our boy'
Finding out I was pregnant for the fifth time was a happy surprise.
At 36, I was already a proud mum to Ayla, then five, Taite, three, Cooper, two, and Jackson, one.
Excited to add to our family, my husband, Andrew, and I were also still reeling from a devastating blow.
Our toddler Cooper had just been diagnosed with Wiskott-Aldrich syndrome. The rare genetic disorder, that only presents in males, weakens the immune system and reduces the production of platelets, blood cells that keep bleeding under control.
A knock to the head could trigger a fatal brain bleed, and a common cold posed a potential death sentence.
‘There’s only one cure – and it’s a bone marrow transplant,’ a specialist explained.
Without it, our boy wouldn’t make it past the age of 20.
Putting our hands up to donate, Andrew was rejected as he’d had radiation to overcome cancer years earlier, and, as a carrier of the disease, I was ruled out.
Sadly, like me, Taite and Ayla were carriers, but Jackson was a perfect match.
Still, I wanted to spare him the painful surgery to extract the bone marrow from his hip if I could.
'Could you save your brother instead?' I wondered, stroking my tiny bump.
If our unborn baby was a match, stem cells could be harvested from its umbilical cord. As my tummy grew, Cooper’s health deteriorated. When he was three, he came down with pneumonia and an auto-immune disease called vasculitis, which made him writhe with arthritic-like pain.
It tore my heart to pieces and tinged the birth of our new bub with fear.
'Please, not you too,' I pleaded as I went into labour.
After having a boy, our worst fears were confirmed. Our new baby, who we named Fletcher, couldn’t be his brother’s saviour. Diagnosed with the same awful condition, he had his own battle to fight.
‘It only affects one in 10 million boys,’ a doctor told us. 'It’s not rare in our family,' I thought, grimly.
Worse, none of the kids were a match for Fletcher. Putting his name on an international donor registry, we began the hardest year of our life. In and out of hospital, we prepared for Cooper’s transplant.
‘The boys have a special type of sick,’ I explained to their sisters.
With no other option, brave Jackson had his bone marrow extracted and it was given to his brother.
Previously on death’s door, Cooper was now on the road to recovery. But what would become of baby Fletchy? Changing his nappy, it’d be stained red with blood he’d passed, and the slightest bump mottled his skin black and blue with angry bruises. The rest was covered with eczema.
Knowing just how close we’d come to losing Cooper, Andrew and I were prepared to do anything to save Fletchy.
So when doctors suggested IVF to make a baby, which would be a guaranteed donor, we knew we had to try. By now, Fletcher was one. What if, like Cooper, he spiralled at three?
Running out of time, I watched a year slip away as we jumped through countless bureaucratic hoops. Before we could go any further, an ethics committee needed to approve our case. Thankfully, we were given the go ahead.
Meanwhile, a special test had been created in the US just for Fletchy, which would screen the embryos we created to make sure they were a perfect match.
From the start, we knew there might be backlash about our choice.
Heartbreakingly, after 14 rounds of IVF, which has cost us $140,000, we only had four viable embryos. None were a match.
Chewing through our life savings, we even cashed in our super.
'I don’t need a cushy retirement, I need my son!' I thought, determined.
At Fletcher’s third birthday last May, his smile was brighter than any flame.
But as I caught Andrew’s worried glance, I could see his brain ticking away frantically like mine: 'Was this the beginning of the end?'
As time has gone by, Fletcher’s platelet level has dropped, causing blood to ooze from his mouth, nose and ears. Despite it all, he’s a really happy kid, who loves jumping on the trampoline.
I try not to wrap him in cotton wool, but I’m constantly on edge.
After another seven rounds of IVF this year, we’d created seven embryos, which are being tested in the US now. I’m hopeful that one of them will be our miracle bub. Now, Cooper’s seven and while his platelet level is still relatively low, his immune system has completely recovered.
‘You’re a brave boy,’ he tells Fletchy.
Our family is blessed with so much love and I just can’t wait to add to it.
To contribute to the Densley’s IVF fund, donate to ‘Fletcher’s Transplant’ on GoFundMe.
