Won’t know he’s dying
I’m terrified every time my son gets a splinter
Placing my newborn son Dexter in my arms, the midwife beamed.
‘He’s perfectly healthy,’ she smiled. It was August 2013, and I gazed adoringly at my son’s beautiful little face.
‘Welcome to the family,’ my husband Tom, then 31, said, stroking Dexter’s chubby cheek.
We settled into family life, even relishing night feeds and nappy changes!
But, at 6 weeks, Dexter collapsed after waking up for a feed.
Terrified, we rushed him straight to Bristol Royal Hospital for Children, where doctors confirmed he had a mild case of hypothermia.
His temperature had dropped to 33C, it should have been 37C.
How had I not noticed?
I thought.
Doctors suggested I hadn’t been wrapping him up properly. I was racked with guilt. ‘Why can’t I look after my own son?’ I sobbed to Tom.
Then, at 3 months, Dexter started teething.
But he’d rub ulcers under his tongue until they bled.
And once he had teeth, he’d chew his tongue until bits actually fell off.
Yet he never cried, even when I inspected his angry-looking injuries.
I was back and forth to the doctors, but they were baffled.
Dexter’s wounds were superficial, didn’t seem to bother him.
So there was nothing they could do.
Yet, after almost every meal, Dexter’s face would be smeared with blood.
Strangers would give me dirty looks.
I stopped feeding him in public, and Dexter and I became isolated.
Going to playgroup was traumatic. I was constantly on edge, watching him like a hawk.
I’d run after him with a wet wipe as he accidentally smeared blood on the toys – or worse, other children. I can’t bear this, I thought.
So we stopped going.
Ashamed, struggling, I cut off all my friends, too.
Finally, in April 2014, a breakthrough...
‘Your son could have a genetic disorder,’ one doctor said. Tests were carried out, and in April 2015, Dexter, then 2, was diagnosed with hereditary
sensory and autonomic neuropathy, with congenital insensitivity to pain.
‘He can’t feel temperature or pain,’ the doctor explained.
It was rare, affecting one in 125 million people.
And there was no cure.
Finally, we knew what was wrong with our little boy.
But he’d have to live with this for the rest of his life.
‘How do we deal with this?’ I asked Tom. He didn’t have an answer. The enormity of what we were facing hit us.
Pain is the body’s way of teaching you to avoid danger and accidents. But Dexter felt no pain. He struggled to learn what was dangerous and what was safe.
Why would you fear falling over, if falling over didn’t hurt? Every time Dexter bumped himself, I’d rush over,
He’d chew his tongue until bits actually fell off
checking for everything from a splinter to broken bones.
Only, he soon learnt he’d get my attention if he threw himself on the floor, or whacked his head against a door.
‘It might not hurt you, but it’s hurting Mummy,’ I’d tell him. Life was exhausting. And we continued to make mistakes.
In August 2016, we had a family barbecue. As Tom cooked the sausages, I relaxed in the sun and Dexter happily splashed around in the paddling pool.
But when his cousin dipped her toe in the water, she shrieked. ‘It’s freezing!’ she yelled. I rushed over. Dexter had been sitting in there for 20 minutes!
I bundled him in a towel, desperately trying to warm him.
But his body temperature was so low, it wasn’t registering on the thermometer.
Tom and I knew from previous experience that he’d developed hypothermia.
We tried to raise his temperature, cuddling him close. I felt so guilty. ‘I should have kept checking the water,’ I sobbed on Tom’s shoulder. We both felt helpless.
Weeks later, we had another big scare. Dexter’s nursery called. ‘He was dancing and his leg gave way,’ his teacher explained.
I rushed over in tears, found Dexter, then 3, sitting happily with a paramedic.
‘Hi, Mummy!’ he beamed away. Not upset or scared.
Yet, at the hospital, X-rays showed Dexter had broken his left shin bone.
As doctors set his leg in a cast, he didn’t need any pain relief.
And, of course, as soon as we arrived home, he refused to rest.
Couldn’t feel the agony of the broken limb.
So he ran around on his cast, ended up with ulcers around the edges of the plaster.
Thankfully, now he’s 4, Dexter is slowly learning about his condition.
Last year, he even started asking if his food was too hot for him. A huge moment for us. While scalding food might not hurt him to eat, it could still cause a lot of damage.
People think Dexter is a superhero.
‘He’d make a great rugby player,’ others say.
But they don’t realise the extent of his condition.
One day, he might have a heart attack or develop something like appendicitis...
He could be dying and his body wouldn’t know. He wouldn’t feel a thing. But, for now, I’m trying to relax and enjoy spending time with my son.
He loves diggers and DIY, helping Tom around the house.
There’s going to be plenty more bumps and bruises along the way, but I’m determined he’ll have a normal childhood.
And, as much as I want to, I’m trying not to wrap Dexter in cotton wool.
Quite literally.
Finally, we knew what was wrong. But there was no cure