Last year, when Mikaere was in his end-of-life seizure coma and it was all doom and gloom, he spent a lot of time on his back. As in, 24/7 on his back.
Because he was terminal, no one saw the need to reposition his head. This meant Mikaere developed an epic flat spot. Like the flat spots of all flat spots.
The NHS told us it was cosmetic, nothing to worry about it. Except that because his flat spot was so epic there was a RIDGE. And Mikaere didn’t have the tone to push his head over that ridge, so he never looked left. Ever. Which meant all his muscles on one side developed, but not the other.
Cosmetic my behind. This is one of those lessons that hit me in the face: as much as you want to trust your doctors and therapists, always make the point to ask if an answer is NHS policy or evidence based. Because there is PLENTY of evidence that an epic flat spot like this is not just cosmetic (I’m fuming, can you tell?)
Here’s the thing, I asked initially when Mikaere was six months about the epic flat spot. I didn’t think to question it until Mikaere was a year. Fail. This is a fail because treatment is only applicable while Mikaere’s skull is still soft enough to mould, meaning only until his fontanelle closes, which typically happens around 18 months.
That extra six months could have been everything (which is why I’m so annoyed with myself).
But hey ho. Breeeeeeath out. Be calm. Wooosaaaaaaaa.
We went and saw a private craniologist who scanned Mikaere’s head and confirmed the presence a flat spot. A severe severe flat spot. You can tell just by looking, so this was no surprise.
So we got Mikaere measured up and now he has a fancy helmet. We were very very lucky to get it funded by The Boparan Charity (so very generous!!!) which we’re grateful for, because the cost of a helmet is almost two months rent.
He tolerates it quite well, which is handy because he wears it for approximately 23 hours a day.
We take it off for physio, swimming and bath time. That’s it. Mikaere even sleeps in it.
It’s not so bad, it’s slotted into the routine no problem. It’s been a wee while now and we’re already seeing gains.
Well, not ‘seeing’ because he’s got a full head of hair, but we go back every two weeks and the measurements are going in the right direction. It’s a millimetre by millimetre change, so we’re patient, but forever optimistic. As long as his fontanelle is open and the measurements are going the right way I’m happy.
Even better is that since we’ve started the helmet treatment Mikaere has started looking left as his ridge gets less severe. How good is that?!
So yes. I know so many people are on the fence with plagiocephaly helmets, but it’s been good for us. Stay tuned for a million more helmet selfies!