Flat head syndrome and using an orthotic helmet

Elliot was born with plagiocephaly – or flat head syndrome, as it’s more commonly known. His parents had to decide whether to risk leaving it, as the NHS recommend, or to put him in an orthotic helmet for 22 hours a day. They chose the latter. Here’s what happened…

Alison Giroux lives in Swiss Cottage, north London, with her partner Ryan and their two children: Amelie, four, and Elliot, one. She works for TFL (Transport for London), in employee communications. 

“When Elliot was born, he had torticollis – restriction in the neck. He was a planned c-section but they pulled him out with forceps so we don’t know if that caused it or if it was the position he was lying in the womb; always turned in one direction.

Around six weeks later, we noticed he was getting a big flat spot on one side of his head. For several months we tried to reposition him; to turn his face the other way, and we were taking him to an osteopath once a week, who specialised in kids. She got rid of the torticollis but having said at the outset that she’s able to fix kids heads in 80% of cases – to get rid of ‘flat head’ –  we noticed that after several months, it wasn’t improving at all. In fact, it was getting slightly worse. We thought: oh gosh, he’s going to end up with a really weird shaped head.

Treating flat head

There’s two different kind of head disfigurement: Elliot had plagiocephaly. Another – brachycephaly – is where the forehead is wider than back of head. We’d heard about these orthotic helmets you can get, they’re custom-made for the baby, using a 3D scan of the head. The way it works is that it applies a small amount of pressure on the part of the skull that’s bulging then there is some space where there’s the flat spot.

By this stage, Elliot’s head – from above– looked like a parallelogram. So I went for this consultation about an orthotic helmet, having ummed and ahhed, as I felt so bad about the idea of putting him in a helmet.

A couple of friends are GPs and had just done training through the NHS where they were told that a study proved these helmets don’t do anything. They were told there’s just as much chance of getting a child’s head back to normal by leaving the head, just repositioning them.

It can lead to other complications

We didn’t know what to do but had to do something. Besides aesthetics, flat head can cause problems with the ears, and because of being misaligned you have to wear custom glasses, if you need them, which Elliot probably will as I’m quite blind. So there were a few different reasons we decided to try the orthotic helmet.

At our first appointment, the orthotist was really helpful, she explained the process and pointed me towards another study showing the opposite of what I’d be told before. In the last 10 years they’ve treated thousands of kids and have seen a change in every single one.

They measured his head and he was 14mm out of alignment. Anything over 12mm is considered severe asymmetry. Anything below 6mm is considered normal head symmetry. So we decided to get the helmet. I always thought we might. It cost about £3000 – that covered the cost of helmet being made and then all of the appointments. So I went every two weeks for a fitting, as they make adjustments as you go along and the baby’s head moves.

The NHS don’t provide orthotic helmets

We had to go privately, as the NHS point to the study saying that helmets don’t work. So that was their line. If you go onto their website it says there’s no evidence to prove that helmets work; that they are uncomfortable, cause parents to not cuddle their children. But the orthotist said they’re custom made so if it’s not comfortable, it’s not fitting properly. When Elliot started using his there was a red mark so I took it in, she fixed it and there was no problem after that.

Elliot with his sister, Amelie

We used the London Orthotics Consultancy (LOC). They have a Facebook page and when you go on it, all the parents are so happy that they chose to use the helmet. I didn’t contact other parents who’d done it but I looked through the Facebook page, and had a few friends who had friends who’d done it. I talked to the osteopath and she said: I can’t tell you what to do but if it were my kid I’d do it. Someone likened it to braces – if your child’s teeth are crooked why wouldn’t you use braces.

The earlier you get it, the faster it works because the bones in the head start hardening with age. So you notice a lot of progress in the beginning then, for us, it tapered off at the end. But if you put it on early, you can also have a regression when you take it off, as the head is still too soft. So in that case they might recommend continuing to wear it overnight.

Elliot wore it from about the age of seven months. It had been made in the orthotists workshop and there is the option for different coloured helmets, transfers to decorate it… there are even things on Etsy you can get custom-made to cover it in different patterns. We chose plain blue.

Elliot wore the helmet for 22 hours a day

He wore it 22 hours a day – taking it off for an hour in morning and an hour around dinner and bath time. And it can’t be worn in water – so for swimming we removed it. Also, on Christmas Day and special occasions he didn’t wear it. He adjusted really well; when we took it off he’d scratch at his head but otherwise he was absolutely fine.

We kept it on for five months though for the last month, we’d leave it off during the day. He did’t make much progress at the end, so we took it off last Tuesday. The bump on his head has gone down from 14mm down to 5mm – so it made a huge difference. They send you a report. Like I said, it resembled a parallelogram before he had the helmet and now it’s almost perfectly round.

Elliot now, aged 1, without the helmet

One thing that we’d noticed – and it’s impossible to say if it has anything to do with the helmet – he’s been quite slow to move around, he doesn’t crawl, he does a bum shuffle. And he only started moving around at all after the helmet was removed but we’re not sure if that’s a coincidence. It didn’t restrict his vision, nor was it that heavy but the only thing I can think of is that maybe it felt awkward. He never wanted to be on his tummy at night, as it had a Velcro strap on one side so he’d always lie on one side. And he still doesn’t sleep on his tummy. But he’s moving round loads now.

Some parents said on the Facebook group said that their children got funny reactions. I think some people thought that Elliot was wearing a helmet because he had fits or was always crashing into things. Other kids would always come and touch him – they really interested – and he didn’t know it was because of the helmet, so he liked it. They’re more common on north America, I think. We’re from Canada and when I talked to my mother-in-law about the flat head, she said: oh, you just get a helmet for that.

If anything, I was probably less protective of Elliot when he had the helmet, as it acted like a crash helmet. When he was learning to sit, if he fell backwards, he would cry but wouldn’t smash his head, as children without a helmet might. I think I was more self-conscious at first; thinking everyone was looking at him but then you stop thinking about it. People would just say really nice things, almost like they wanted to give me sympathy, so they would say he was really cute.

It made me think about parents who might have a child with a true disability. It’s a form of reverse discrimination, where they go out of their way to be nice. But there was nothing wrong with him – if your child truly had a disability it might be more offensive.

My advice to other parents?

To another parent in the same situation, I’d say go for the consultation: it’s free, she gave me the facts – good and bad – and let me go and think about it. Then she emailed pictures, and more information, but there was absolutely no pressure at all as they know it’s a big decision. I’d say: talk to other parents who’ve done it, because I don’t think many parents, if any, wish they hadn’t done it.

I do find the NHS stance odd – I guess they don’t want to be funding it – but it’s peculiar because when I had the consultation I said to the orthotist: what’s the success rate, and she said to me: we’ve treated 4000 kids and every kid has had an improvement. So it’s strange that the NHS says they don’t work; that you shouldn’t do it; that it’s not good for kids. I don’t know if they’re now being pressured to say that, or what.

The orthotist said that at Elliot’s age, now that he’s a year, there probably won’t be any movement because now the skull is hard enough that it’s not going to regress. She said it could move either way 1-2mm – could improve or get worse – but she doesn’t really think that will happen. She said that we’re welcome to go in at any time to have him measured, but she thinks he’s past the stage where we really have to worry.

We’re still so happy that we did it. I really don’t think it bothered him that much and it certainly didn’t make me any less likely to be affectionate. We had such a good experience so if people are considering it, I’d encourage them to at least have the consultation.”

Does your baby have plagiocephaly – or flat head syndrome? Will you go for the orthotic helmet?

(This article was originally published in March 2016)