"Luca and Rowan were born at 37 weeks gestation with 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, as his forehead was quite protruded on one side.
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 up 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 Luca’s 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.
Luca was so severe and his face looked so asymmetrical that we decided we didn’t want to take the risk of doing nothing. So we made the appointment at Steeper Clinic, and 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. Luca's 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.
Within 5 days of wearing the helmet we really couldn’t believe what we were seeing, Luca's 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 Rowan's 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 Luca's 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 for the treatment we were going to get the most we could out of it for our boys.
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.
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."
- Amanda, mum to Rowan and Luca.