When Candice Petruzis noticed that her baby daughter had an unusually flat head shape, she began a long, and often frustrating journey to get the condition corrected, and to get the medical profession to listen to her concerns. Here, she tells her story:

We first noticed Elise’s head flattening on one side when she was just 8 weeks old. I mentioned it to the health visitor who told me that all babies get flat spots due to their sleeping positions. She advised me to speak to my doctor about it if I was worried – so that’s what I did.

The doctor assured me that all babies get some flattening on the head, and that my daughter would grow out of it. When things didn’t improve, I returned to the doctors on more than two occasions and each time I came away unhappy that no course of action had been recommended. I then turned to the Internet for help. I wasn’t sure what the condition was called so I just googled ‘flat head’ and numerous sites came up.

One of the sites talked about STARband  - a special helmet that is worn by a baby to reshape their head as it grows. I had a good read of all the parents’ stories on the site and the explanation of the condition, which I discovered was called plagiocephaly. As I read through the site, I realised that the STARband treatment was not funded on the NHS, and curious to find out the price of the treatment I gave them a ring.

The receptionist told me that the treatment would be just under £2000! I simply couldn’t afford that, so I felt I had to look at other options.

I booked an appointment with a local osteopathic centre, who told me Elise’s head shape was to do with her sleeping position. Elise had four sessions of treatment with the osteopath but there was little improvement. I knew that the only option I had left to correct my daughter head shape was STARband.

I booked an appointment to see Steve Mottram at the Leeds Technology in Motion centre, who is an expert in STARband and plagiocephaly. I also wrote a letter to my local Primary Care Trust to apply for some funding to help pay for the treatment for Elise. However, they replied by saying that because I hadn’t been referred from my GP to the Technology in Motion centre I was not eligible for funding! I spoke to my parents and they said they would try and help with the cost of the treatment.

We saw Steve when Elise was 5 months old and he confirmed that Elise had brachycephaly and mild plagiocephaly. Steve was very understanding and put us at ease. He took Elise’s medical history and her measurements to give a complete assessment of Elise’s condition. She then had the STAR scan to get a more accurate image of Elise’s head. Steve told us that she would have to wear the band for 3 months. We chose the design for the helmet.

I left the centre with mixed emotions because for all those months I had been back and forth to the doctors and each time they made me feel like I was paranoid and stupid. Steve, on the other hand, had finally confirmed that I was right to worry after all - there was something wrong with my little girl’s head.

Two weeks later we went back to the centre to get the STARband helmet fitted. A part of me felt really nervous and apprehensive. After all, it wasn’t easy having to band your baby up, but the other half of me knew I was doing the right and best thing for her. We had tried everything and this was the last option.

We couldn’t delay the treatment, as it is effective when the baby is young (5- 24 months). When Steve fitted the STARband, I thought Elise was going to scream the place down, but she was fine she didn’t even bother about it. I felt so relieved. Steve then showed us how to take the helmet off and how to put it back on again. He also went through the instruction on how to build the wearing time up and when to take it off.

The first seven days was the hardest. I felt like I was forever putting it on and off and that’s the bit Elise doesn’t like! She doesn’t mind it when it’s on, it’s the taking off and putting back on she doesn’t like.

Elise has had the STARband for eight weeks now and I have seen excellent progress. Her head is finally forming properly. It has been really good. Elise has adapted to it brilliantly and she doesn’t mind it at all. We have been back to the centre twice to have it eased and to review the growth. It’s going really well I am very happy. I just wish that it was funded on the NHS, because I know from experience that people just can’t afford the treatment. I only managed it because all my family did their bit.

Elise has six more weeks of treatment then hopefully she will have a perfect shaped head again.