AIBU to get a helmet fitted for my six month old

[WWYD00]

My beautiful baby boy has positional plagiocephaly. He is six months old. He is just coming to the end of the "perfect" age to get a helmet fitted. His flat spot has been assessed and it is Severe 1. So bad but not horrific.

Treatment is for six months roughly and he will need to wear a helmet for 22/23 hours a day for that period of time. It is a lot of work and a lot of money (£2.5k) but I have the finances to do this for him and the time to dedicate to it. He only has until he is 16 months to have it treated. It will not go away on it's own it will just be less noticeable with his hair and as his head gets bigger. His face shouldn't get any more deformed. It is marginally deformed now but without looking for it you probably wouldn't notice it.

As the back to sleep campaign is only from the 1990s it is hard to find adults with positional plagiocephaly but research seems to suggest whilst there is no brain growth issues there could be developmental issues. This concerns me as I worry he is a late developer anyway. I also worry about the mental aspect of looking different. I was bullied in school, I wouldn't say I am attractive and I would hate my little boy to be on the receiving end of this. Children and adults can be very cruel. Whilst I will get looks and questions about his helmet for six months I would hope my family will understand and most of my friends most likely will. Also during a pandemic who is he likely to see anyway there are no groups etc to go to so no one (strangers I mean) to question me.

So AIBU to get one? Would you/have you done the same. Or have you left it and regret it. To me the money and the timeframe is nothing to a lifetime of people being arseholes towards him.

@ pyjamarama my son is proof they do work. His head continued to get worse in the two weeks between his first and second appointment, his head was never going to magically sort it’s self. The only option offered to us was leave it and see what happens and if it is still the same at 18 months we will crack his tiny little skull open and realign it.

My friend's son wore a helmet when he was a baby, as he had a bad flat head. Her Dr told her the helmet was the only way to correct the condition, though she had to pay privately for the helmet itself (which is partly so costly because babies will need multiple helmets, as their heads grow). Her child didn't mind wearing it and he's now 5 and absolutely fine (helmet corrected the problem).

I’d get it done. A friend’s DS had a really badly-shaped head. Yes, it’s less noticeable now he has hair, but he still looks odd as it’s affected his facial features. Plus his dad’s bald, so if/when he loses his hair then he will look odd.

Hi OP, sorry to hear this

What has your GP/paediatrics team advised?

I don't think these helmets are something you buy yourself unless a medical professional has directly recommended your child to have one, with a pre planned duration, with surveillance and follow up during the process.

I think that should be guiding your decision making.

I wish I had gotten one for my DS. I tried everything at time: tummy time, special pillows etc but it did not improve. His head was commented on all the time by people as a baby. He is now 8 and his head is still flat at back. As his dad is bald as are all the males in my family I now worry about his flat head as an adult. I would get the helmet if I was you.

Hi OP - it's really difficult to advise but I feel your pain. DD1 has it, I think mainly due to her being such a good sleeper, I asked and asked and asked the HV and GP before I finally demanded a referral to the consultant paediatrician, and even then they said her head had developed like that in the womb, that it was nothing to worry about and that it would correct itself. My mum bought me a pillow for flat head, this was okay and did help but like others said it only works until they begin to roll over in their sleep. She is 5 now. It isn't obvious by looking at her that that her head is misshaped, however when you look from above you can see that it is. It is also difficult at times to part her hair evenly due to the shape of her head.

I learned my lesson for DD2, she began to get a flat spot at about 6 weeks and I noticed it and corrected it by lying her on the opposite side and encouraging her to look in the opposite direction from the flat spot.

I think it is really bad that health care professionals can't be more upfront and honest about plagiocephaly and it's causes. I think as a first time parent you are scared to go against advice, I just wish I'd have listened to my mum and not the HV or paediatric consultant.

Thank you everyone for input. I don't understand how they say they don't work when so many people think they do but I'm not an expert and I've read the paper. My son's head is noticeable. At the moment I think he looks cute with it but I fear the issues it may cause later if not addressed. I just want the best for him.

Go for it. We did it for my kid, exactly the same issue. Reduced the asymmetry by 20mm I think. Tolerated the helmet brilliantly. I still notice the slight mishape but it would be inifinitely worse if not for hemlet plus osteopathy

This pillow stopped my dd's flat head from getting worse:

www.theraline.co.uk/babypillow.htm

It's never corrected from how bad it got though. I'm glad I insisted on using the pillow at all times- night, pram, naps, even in the bouncy chair.

I’m a HCP specialising in this area. Helmets don’t work (see link to research by pp). Physio is helpful if torticolis is present. The NHS used to pay for them, until the evidence showed that they are ineffective (approx 20 years ago) so nothing to do with cost

Sorry, but if you are a HCP you should understand that there is a very poor evidence base. The one paper cited here is full of holes, the main one being that you can't blind people to whether they are in the control (no intervention arm) or the intervention (helmet) arm. This will always be the case with these type of trials as they are not like a pill where you can hide the placebo/intervention. This means that the non-intervention group may have been alerted to their being a problem just by taking part in the study, done some intervention (e.g. more tummy time), thereby increasing the chance of a null result. The two groups were also not the same with the same problem.

Like lots of health problems, you have to take a guess, reading the very slight evidence, about whether your personal child will benefit. On average, there was no difference, but what that means is some got better, some didn't and that wasn't drastically different whether they wore a helmet or not. Many of the children did grow out of it, but actually most did not and that's what the paper itself states.

I would agree with the HCP that getting physio intervention is a must in this situation whether or not you go ahead with the helmet.

Finally, the NHS did not pay for private helmets 20 years ago, they used to make a really crappy one in Bristol around that time, or slightly later, until it was abandoned as far inferior to the commercial products. They certainly didn't pay for private treatment when I was in the system, and they are very unlikely to, as the evidence-base simply isn't there, one way or the other. One paper or even two RCTs wouldn't be enough, esp with the design flaws of the BMJ one.

This American Academy of Paediatrics review shows what evidence there is and concludes there isn't enough:

www.aappublications.org/news/2016/10/27/Plagiocephaly102016

this is from GOSH
www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat-index-page-group/positional-plagiocephaly

@WWYD00

Thank you everyone for input. I don't understand how they say they don't work when so many people think they do but I'm not an expert and I've read the paper. My son's head is noticeable. At the moment I think he looks cute with it but I fear the issues it may cause later if not addressed. I just want the best for him.

Because anecdote is not evidence, and in order to recommend a particular treatment there needs to be good evidence that it works. The research is that most babies heads (with plagiocephaly) get better with a helmet or without a helmet. People who have spent significant sums of money are more likely to ascribe the improvement to the helmet. All craniofacial units in the UK have a lab who could produce the helmets for a few hundred pounds, which is peanuts in healthcare terms. If they worked we would use them, but they don’t. Get a referral to a craniofacial unit & speak to an expert, rather than randoms on the internet.

I am a midwife in private practice and this is something that I talk to parents about with regards to trying to prevent plagiocephaly. I feel frustrated that the NHS don't address this issue either as a preventative or with regards to treatment. I don't know about the evidence for helmets working. I know two people as friends who used them, one seemed to work exceptionally well, the other one didn't. I often refer to a cranial osteopath too, as this really helps. I know it is difficult at the moment as lots are shut (I know some are working, but not many). As a mother myself, it is something I would do if I had a child who was affected, on the chance it would work. I see lots of children and teens with a flat head.

My situation was different but my dd has scoliosis and has to wear a brace from the age of three to 15. She wouldn't have been able to have children or do sport or many other things that she now can do if she wants (she wouldn't have had the space to carry a baby) sometimes you make choices that may seem hard on them at the time (making him wear a helmet) but it is in his best interests.

My friend's little boy had a helmet fitted as his was quite a severe case. She agonised over the decision and had to fund raise but she was so glad she went for it. The results were amazing and he was young enough for the helmet not to bother him.

I'm happy to get my son physio. I simply can't because of the Coronavirus. Nowhere has been open. I have tried. I'm on a list to be contacted. I have done some exercises myself but I'm not a trained physio and I am scared of hurting my baby. If you have seen the exercises some are pushing the face down the other way. He doesn't like it and cries. I don't want to see my baby cry and worry I'm hurting him.

it's a shame that physios are not open atm. they do such vital work.

with dc the checked range of movement and favourite positions.
it's so long ago that I can't remember all exercised we did, but dc's favourite one was tummy time and a frog puppet with a bell that we jingled from different positions to encourage dc to turn the head and stretch gently.
no crying was involved

@Bellesavage

My son didn't, but he was crawling at 5 months so was up off his head and we were doing the physio religiously so it's sorted itself and he's left with very very slight flattening which only I can see when he's in the bath. My family males go bald early so I wanted him to have a good head shape and I'm happy with it now. His range of movement is also better.

Cranio osteophathy is woo. People say it works for them but the evidence suggests its no better than a placebo. A physio will actually work with the muscles involved rather than waving a hand over them and assuming the magic energy forces will help with 'realignment'.

Totally disagree about cranial osteopathy. My first had a very strange shaped head in early weeks (more than normal) and the midwife who came in the early days on home visits recommended a local cranial osteopath (our particular one is world-renowned) so I went fully expecting it to be useless.

Dear God, was I wrong! I have no way of scientifically explaining what the hello she did or why it helped, but he remained less severely for three weeks. Returned and same thing - improved again.

She also suggested I should get on her couch whilst I was there and did something - barely brushed her fingers against me - and I could walk and move so much more freely after that. I hadn't even realised I had not been but my mum who was there with me to support with my son said when I got up I was walking like a completely new woman. (Difficult birth, shoulder dystocia narrowly avoided for son, 2nd and 3rd degree tears for me.)

Tbh, it almost pissed me off because I couldn't explain what had happened!

We continued to see her as she helped with reflux and she asked about sitting, rolling etc (late development)...did something and he suddenly flopped forward on me knee, rotated around and back up (hard to explain) and the very next day was the first day he rolled over.

(Don't think she did much for his head shape though. Plagio continued and we were quite concerned but didn't have funds for helmet, and opinion about their effectiveness seemed too mixed to take out a loan. You can't notice it now he's 6.)

We had a similar situation and got a little head cushion with a hole in it, can’t remember the name and used that in his buggy and for supervised naps. Didn’t get a helmet. Had him off the back of his head as much as possible (I’m surprising how many times you don’t realise they have their head resting on something!) The back of his head is still slightly flatter than some of his friends but not in any significant way, even when he has his hair cut short. He’s nearly 9 now and you wouldn’t look twice at his head shape.

It does depend on the individual diagnosis of course, just saying a helmet isn’t always needed and we personally had quite good results without.

I have literally no idea on this topic however..

Please do not base your decision on 'the NHS would provide if it were necessary' because this is categorically untrue.

I need (and they agree I need) elevating leg rests on my NHS wheelchair. Not having them is causing me damage as a result of swelling in my feet/ankles.

Will they provide them. No.

Why? Because my PCT does not provide elevating leg rests on adult wheelchairs.

Why? They just don't.

Their advice was to buy a wheelchair that has them myself or wait and see after lockdown and they reopen, if I can be permitted to retro fit myself, at my cost, but via their engineers, which will mean going without my chair for possibly 3 months (ergo, not actually an option even if I had several thousand pounds).

So no, the NHS will not always provide things that are necessary and beneficial.

Whereabouts (broadly) in the country are you, op

I'm in Hampshire, just off the A3 @AnyFucker

Both my sons had helmets. One is now 12, one is 3. Message me if you want any advice x HVs and GPs tell people it improves as they grow. This isn’t true, and once you are past the window there’s nothing you can do.

Ok. Can't help you for that area.