One of my twins had flat head syndrome (plagiocephaly)

This is a controversial subject and one that I’m passionate about. When T1 was about six weeks old we noticed the back of his head was quite flat. At the boys’ first check up I mentioned it to the Dr and he assured me it was fine and would get better when he started to sit up and was putting less pressure on it. We thought nothing more of it.

Weeks passed and it wasn’t  getting any better. We tried our best to give him tummy time and made sure we turned his head when he was sleeping. At the Health Visitor clinics I asked about it and was again told not to worry and it would “pop” out on its own.

When he was around four months old I started to research the subject online. I learnt there was no definitive evidence as to whether it would correct itself or not. I read all about the helmets you could buy for a couple of thousand pounds but decided that I’d rather pursue the repositioning further before taking that route. I bought a heart-shaped pillow from Ebay that had a hole in it which was supposed to help, and I used this everywhere – in bed, in the buggy, car seats and bouncer. I kept him off his back as much as possible and used a bumbo seat whenever I could.

I looked at it constantly, obsessing over every bone in his head. There was some improvement as the weeks passed but it was only slight.

More time passed. I felt powerless to do anything. I was reluctant to talk to any of the helmet clinics as I was sure that if I went to one they’d tell me he had really bad plagiocephaly and send me away with a bill for £2k which we really couldn’t afford. I flitted between thinking I was a bad parent for letting him get a flat head and thinking that maybe I was making it out to be worse than it actually was.

I spent more time online researching. Finally, when he was around 10 months old we took him to the GP again. She said it was a bit flat but assured us it would grow out on its own. We asked to be referred to the hospital where we hoped to get a serious consultation and advice. It took some effort, but she finally agreed.

A few weeks later we went to the hospital. The Dr examined him. She told us she’d seen babies with heads much flatter than his and that she didn’t think it looked too bad. She explained that as the NHS doesn’t fund the helmets they can’t endorse the treatment. Instead they tell patients that it will grow out or that hair will cover it. She told us that you don’t see adults walking around with flat heads so that proves it must grow out. This was something I’d heard many times from the Health Visitors and GPs already, but actually, as the ‘Back to Sleep’ campaign to prevent cots deaths started in the mid ’90s, flat head syndrome is a recent phenomenon. Also during my research online I did find forums where adults were confessing how much they hated their flat heads and wanted to undergo massive surgery to correct it.

We left frustrated that we’d even bothered with the NHS route. I contacted one of the leading clinics  straight away, deciding that we’d see a professional and have his head measured once and for all.

He was almost 12 months when we went to the appointment. We decided that, regardless of the verdict, we’d go away and think it over before committing so that we didn’t feel pressured into anything. The consultant was cool and businesslike. She acknowledged that he had a flat head and took out a measuring tape. He writhed around on my lap as she took measurements and typed the results into a computer. I had expected computer technology to be used to make accurate measurements, but instead she was relying on an old-fashioned measuring tape and a set of forcep-type measuring tools. After a few minutes she told us that he was at the top end of moderate plagiocephaly and he had mild brachycephaly. She offered us the helmet as a solution. We weren’t really sure what to do. I asked what she thought about the measurements and she told us that she thought it looked more noticeable than a ‘moderate’ case. She said we needed to decide straight away if we wanted the helmet as they would take the measurements and get it made immediately. If we wanted time to think about it we’d need to come back in a few days to have him measured again. It was a three-hour round trip for us so that wasn’t a great option. Eventually she agreed to take the measurements anyway and gave us the weekend to think it over.

We felt sick. Our fears were confirmed – he did have a flat head and the consultant thought it looked worse than moderate.

We went home to face our dilemma. We changed our minds every few minutes about whether to buy the helmet or not. The conclusion we came to was that we didn’t feel at home at the clinic. We didn’t feel like we received any genuine guidance about the best way forward and we also felt the measurements were taken so quickly and using such crude methods that we weren’t convinced they were correct. So after some debate we booked to go to the Technology in Motion clinic instead for a second opinion.

From the moment we arrived we felt comfortable. The staff we met were all lovely and welcoming. There were plenty of toys for the boys to play with, and the consultant was warm and friendly. He also took measurements with a tape measure but seems to take more time over them. When the results were ready he told us T1 was slightly worse than the measurement the first clinic  gave – he was on the lowest point of the severe scale for plagiocephaly. Then he took the time to talk us through the realities. As T1 was now 12 months – and visibly very active –  he said he didn’t think a helmet would suit him and he’d be trying to take it off all the time. He also was sceptical there would be much improvement now and that it was probably best to leave it to see what happens naturally. Unprompted he told us that if it was his own child he wouldn’t get a helmet put on him if his head looked like T1. That was all we needed to hear.

Relief washed over us. We had an answer and it came from an expert who we trusted – he was turning down a £2k payout so we knew that he wouldn’t do that unless he genuinely believed in what he was saying.

That was 12 months ago. I can hardly believe that this time last year we were in the middle of this all-consuming stress about whether we had ruined our sons life by allowing him to sleep on his back.

Where are we now? He still has a flat part on his head and I’m sure he always will. His hair does a great job of covering it and we’re lucky it’s the back of his head and it doesn’t have any impact on the shape of his face or the position of his features (on some children it can make their eyes or ears look lopsided). To be honest, most people wouldn’t even notice unless we were to point it out, although when his hair gets wet it’s more prominent. On the day that we left the clinic we swore not to talk about it again. We drew a line under it as we didn’t want T2 teasing T1 about it later on. But I felt it was such an important subject that I wanted to blog about it and share our experience as I now know so many babies and toddlers with flat heads.

I don’t believe that flat heads pop out on their own with no intervention. Repositioning can work if you catch it early and are rigorous with it. Drs and Health Visitors only give a standard NHS reply – if they acknowledged that it was a genuine problem then they’d have to start funding treatment. I’m not saying helmets are the way forward, but if you are concerned I’d recommend you to go and talk to Technology in Motion for an honest review. I truly believe that for severe cases helmets are the only option. Taking into account measurements from both clinics we know that T1 was somewhere on the border between the top end of moderate and the bottom end of severe. Online I read many stories where parents dreamed their child would one day reach that stage after six months of treatment, so I’m thankful we caught it early to prevent it being any worse, and my heart truly goes out to those who believed the advice they were given from the Health Visitors and GPs and then found that it was too late to do anything about it.

If any of you have been through the worry of having a child with a flat head please do leave your comments. When I was researching the subject online last year I found it a relief to read about others in the same situation – especially stories with happy endings.