Won’t know he’s dy­ing

I’m ter­ri­fied ev­ery time my son gets a splin­ter

Chat - - Contents - By Lind­say Cahill, 34, from Bris­tol

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

What bro­ken leg.?!

He never needs pain re­lief

Lov­ing cud­dles We’re deter­mined to give Dex­ter a nor­mal childhood

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