Can you save our boy?
In order to save her son’s life, zoe Alderson, 31, from Colchester, had to make an unbearable decision...
Who knew if he’d have a future – unless we made this choice?
As I lay my 2-year-old Henry, in his bed, his big, blue eyes filled with tears. ‘It’s OK, darling,’ I soothed, battling with tears of my own. ‘Mummy loves you…’ But Henry’s bottom lip began to quiver.
‘Don’t hurt me, Mummy!’ he begged me.
He knew as well as I did what bedtime really meant.
I’d have to hook up my boy to a pump, push a needle into his leg, and let it take out the excess iron in his blood overnight.
It was just excruciating to watch. Henry hated it and I hated being the one to hurt him.
‘Who’s my big strong boy?’ I’d say, but it broke my heart.
I knew it had to be done, to help him get better.
When Henry was born in November 2015, his heart rate was rapid and blood levels low, he was at risk of dying any second.
Three blood transfusions later, he lay in an incubator in the NICU of Colchester Hospital. I was three floors up in recovery, desperate to see him.
And, when I did, me and my hubby Craig, 38, were told he had a 50-50 chance of survival.
We were warned we’d lose him by 12 weeks – but Henry fought, as I knew he would, and defied the doctors’ grim expectations.
But something was making him sick...and after months of tests, we got a diagnosis. ‘Henry has something called DiamondBlackfan anaemia,’ his consultant said.
DBA is a rare bone-marrow failure disorder, where red blood cells that carry oxygen round the body aren’t produced. He’d need regular blood transfusions or he’d die.
‘What will his life be like?’ I asked matter-of-factly.
I just wanted to know if I’d be taking him to school, waving him off at university, dancing at his wedding.
But no-one had a crystal ball, we had to learn with Henry day-by-day about DBA.
By his first birthday, Henry had been having transfusions
once every three weeks.
It meant his iron levels were dangerously high. His pump was the only thing keeping them at bay.
We had options, though. At 1, he became eligible for steroid therapy. With luck, it’d encourage his body to make its own red blood cells.
It meant only a tablet a day would save my boy. I prayed each night, willed it to work.
But Henry was too poorly. One of his options written off.
Next, we tried chelation therapy, a similar process – a tablet to get rid of the extra iron plaguing his body. But this failed, too. We were at our wits’ end. ‘What are we going to do?’ I wept to Craig one night. None of these therapies were painless, all carried risks – but if one could save Henry, it was worth it.
Still, we were running out of options.
‘I don’t know,’ Craig sighed. Henry’s last chance would be a stem-cell transplant. That’s when Craig and I considered IVF.
We’d always wanted a big family, but another baby as poorly as Henry was scary. Yet if we had IVF, we could make sure he or she was healthy and maybe even a 100 per cent match for Henry... Sadly though, IVF wasn’t going to be right for us in the end… Now we’d have to rely on an external donor.
It was a last resort for anyone with DBA.
Some people survived years without needing this kind of transplant. But, within two years of his little life, Henry was down to one of two options – this transplant or life-long transfusions.
But with recommendations from his doctors, the transplant was his best chance.
I couldn’t believe we’d reached that point so soon.
We turned to the charity DKMS, and it offered us help and support, kept our spirits high when we felt low.
Every week that passed without a match for our boy was agonising.
And still I couldn’t decide if this was a good idea.
Stem-cell transplants carried their own risks.
There were the usual worries about rejection. But the biggest worry I had was the risk of Henry becoming infertile. Agreeing to a transplant meant that he’d undergo severe chemo, which could affect his ability to have children later in life. He was just a baby himself, but now I was deciding whether he could have a family of his own one day.
It tore me apart. ‘How can we choose this for him? It’s his life, his future..!’ I sobbed.
But we had to do what was best for him now. Who knew if he’d have a future – unless we made this difficult choice? Henry was put on the waiting list – and, right now, we’re still waiting. We’re hoping for a match and the op to take place in spring 2019. Until then, we’re just taking it day by day. Now we want to help raise awareness, spread the word. We need more people to sign up, to join DKMS, to help save someone like our Henry... Life certainly isn’t as simple as it seemed four years ago. But we keep reminding ourselves that we were told our boy would die at 12 weeks. In November, he turns 3. Despite everything – the hours spent in hospital, the horrible decisions we’ve had to face – Henry’s happy and he’s here.
Brave Henry has his transfusion Me, Henry and Craig: taking life day by day
Our happy, bubbly boy