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Luca & Rowan’s story

Amanda, mother to twins Luca & Rowan tells the story of her sons’ battle with deformational plagiocephaly, funny looks and sweaty heads…

Luca and Rowan were born on 5th July 2010 at 37 weeks gestation. There were no major complications with the pregnancy and labour but as soon as they were born it became apparent that Luca had a slightly misshaped head, his forehead was quite protruded on one side. Nothing was ever mentioned by any of the medical professionals.

Over the next few weeks we began to notice that Luca also had his head and neck constantly facing towards the right. It seemed almost impossible to make him turn the other way and his face was beginning to look quite asymmetrical. At the boys’ 6 week check we mentioned it to the doctor and we were referred to a paediatrician at the hospital. By this time his head was already getting quite flat on the right side.

We saw the paediatrician soon afterwards and he was diagnosed as having Positional Plagiocephaly and Torticollis. We were told he would get better in time and we were sent on our way with a follow up appointment for two months time. We said we weren’t very happy about this and so an x-ray was done to check for Craniosynostosis (which came back clear) and he arranged for Luca to see a Physiotherapist for his torticollis.

We were spending our whole time repositioning the boys, propping Lucas’ bed up on one side, putting rolled up blankets down one side when sitting in their chairs and giving them plenty of tummy time.. etc etc, but nothing seemed to make any difference.

At 15 weeks we started paying to see a Cranial Osteopath, this was actually worth the money as it made Luca a much happier, more content baby. She told us that his head was actually quite ‘messed up’ inside so we had quite a few sessions. It also helped his neck a little but he still didn’t have the full range of movement and it was still very tilted.

At 16 weeks we also decided to get a second opinion from a private paediatrician on the shape of Lucas’ head and we were told the same thing, not to worry and it would get better in time. He actually commented that he wouldn’t have even bothered with an x-ray or the physiotherapy. This set our minds at ease for a little while, as we trusted the medical professionals.

By the time our next appointment came round at approximately 7mths, nothing had improved and in fact the shape of his head had got considerably worse, it was like a sheer drop on the right side of his head. The physiotherapy didn’t seem to be doing anything to correct his neck either. The paediatrician did actually agree with us that this was the case and referred us to Alder Hey hospital to see about his torticollis. But the appointment wasn’t for another three months.

Before the last appointment I began doing a lot of online research into Plagiocephaly and it was actually the osteopath that put the seed into my head about the remoulding helmets. The more I was reading the more I was worrying that we were running out of time to get the maximum benefit from having a helmet fitted and I didn’t want to wait another three months until we were seen at Alder Hey. I was reading about parents who regretted doing nothing and believing the doctors when they were told it would get better in time.

Luca was so severe and his face looked so asymmetrical that we decided we didn’t want to take the risk of doing nothing. Our eldest son Evan who is now three had a bit of a flat head and so we knew we weren’t being neurotic, we didn’t take any action with his and although he still has a slightly misshapen head, you can’t see it unless his hair is wet!

So we made the appointment at Steeper Clinic, we felt better that we were finally doing something about it. Although our concerns were about Luca we actually made the appointment for both twins as Rowan also had a flat spot but it was masked by how bad Luca was looking. We met Kate at the beginning of February.

The first appointment began with talking about our history and Kate telling us all about Steeper Clinic and the STARband. Then we put Luca into the scanner, it was fun trying to get him to keep still but it was completely harmless! It was no surprise really when his measurements came out as very severe with an oblique diagonal difference of 16.7mm. We then scanned Rowan and his was more surprising, he was borderline moderate/severe at 11.2mm. The decision was easy despite the cost, we would go ahead with a helmet for both boys, the hard decision was which colour to have!

Two weeks later Luca had his helmet fitted, Rowan was to be fitted four weeks later as Kate wanted a doctor to confirm there was no chance of Rowan having Craniosynostosis either. Lucas’ helmet took quite a lot of tweaking as his headshape was really quite abnormal but once it was on it fitted fine. He was weaned into the helmet over the next four days but he didn’t have any problems with it whatsoever.

Rowan was exactly the same when his was fitted, although he was a little bit sweaty! They do smell quite a bit to begin with because of the sweating but you soon get used to it and its not a problem. You also soon get into the routine of taking the helmet off for 1hr a day, we tie this in with bathtime, their heads get a good washing and so does the helmet with the alcohol solution.

Within 5 days of wearing the helmet we really couldn’t believe what we were seeing, Lucas’ head was really rounding out already, so it wasn’t a shock when we had a scan 5 weeks into the treatment and his oblique measurement was down to 9.6mm and Rowans was down to 7mm.

We headed back to Leeds every 2 -3 weeks for the helmets to get tweaked as the boys grew. Luca had some really big growth spurts and we just needed Rowan to catch up a little bit! After just over four months Lucas’ measurements were down to 3.4mm and looking great, so along with Kate, we decided it was time to take the helmet off, it was a lovely feeling! As Rowan was having fewer growth spurts he had his helmet on for another three months, there were times we considered taking it off sooner but we decided as we had paid a lot of money for the treatment we were going to get the most we could out of it for our boys.

The boys have been helmet free for quite a while now and it seems quite a distant memory. But when we see any other babies in a STARband we do make a point of saying hello now!

We have no regrets whatsoever with choosing to go down the helmet route, we always say it was the best money we have ever spent because of the results we’ve had. Luca does still suffer from a tilted head and is still under Alder Hey but at least he has a lovely round head. There are obviously downsides, they get strange looks from people, people think you are neurotic and don’t want your babies bumping their heads!

I did miss being able to kiss my babies heads and its quite painful when you hold them and get headbutted in the face with a helmet… but all these things are immaterial and I wouldn’t change a thing, we gave our babies the best headstart in life. 

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