“Reid was born in January 2017,” Sadie explains, “and when he was born he had a really bad flattening of his skull on one side, called plagiocephaly. This led to problems with his back as well and he developed something called KISS – Kinematic Imbalance due to Suboccipital Stress – which basically meant his spine was affected and he had a really sore, uncomfortable back.”
“He basically didn’t stop crying,” Sadie says. “He cried all the time and he just wasn’t happy. The doctors kept telling me he had reflux and different problems and gave me different medications for him, but nothing seemed to work. I really just felt that there was something else going on and so we looked into it and sought advice on Reid’s plagiocephaly.”
The NHS was unable to provide support as Reid’s condition was considered to be cosmetic and had a chance of getting better by itself over time. Colin and Sadie, however, disagreed and took matters into their own hands. Colin, a retained firefighter at Christchurch Fire Station in Dorset, explained further; “We went to a cranial specialist in Southampton, we had a scan done of Reid’s head and it showed that his skull was flatted by 16mm, which meant he had severe plagiocephaly, it goes in different grades and he was classed as severe.”
After speaking to a number of further specialists the couple decided that the best hope for Reid in terms of correcting the flat area of his skull was to invest in a special helmet, not to protect Reid’s head but to restrict its growth in the areas that were correctly formed and allow for growth in the flattened area. It meant that the helmet would have to be especially made to fit Reid, and that was going to cost £2,050.
It became apparent that the couple needed some help to reach that figure and, after initially fundraising, they contacted The Fire Fighters Charity to see if it could help them to reach the total needed. Initially, however, neither Colin or Sadie was sure whether the Charity supported families.
“We didn’t really know much about the Charity or what it could do to help until I contacted them to ask,” explains Sadie. “Colin donates every month through a direct debit via his work, and he has done since he joined the Service, but it was only after I spoke to one of the case workers there that I really realised that the Charity might be able to help us. In all honesty, I would have thought that the Charity just supported injured firefighters, or anything that they needed help with, I didn’t realise that its services extended to family too.
“The process was really easy and they [the Charity] were really helpful. They were able to give us £1,200, which really helped us and allowed us to go ahead and order Reid’s helmet.”
Once the helmet had arrived and Reid had got used to wearing it, as well as to regular sessions with a specialist chiropractor, the change in his mood was immediately evident, as Sadie explains:
“He had the helmet on for 22-23 hours a day. We would just take it off in the morning to give him a wash and his breakfast, and at night to give him a bath, but the rest of the time he had it on. It just became normal, part of our every day, but the difference it made to him was incredible. He was immediately so much happier and life with him was easier because he was happier. He was sleeping better and all the things that you want a baby to be doing to make life easier.”
“The way that it worked,” Sadie explains, “is that there was constriction around the parts of his head that were fine and perfectly formed, and no constriction around the parts of the head where it had to grow. So when he naturally had a growth spurt it would grow to where it was flattest. He had it on from six months to 11 months, so for about four and a half months in total, and by the end of that time he only had 3mm of plagiocephaly, so it took it down by 13mm. This then took Reid into the normal range and he could take the helmet off. It has made a huge difference and now his ongoing treatment just involves him going to the cranial chiropractor once a month, to get regular work done on his head and his back, just to make sure that his problems don’t come back again.”
“It’s taken a lot of pressure off us as a family,” adds Colin. “We are able to enjoy time with him now. As parents you always worry as to whether you are doing the right thing, but when you see a change like that and you know you are proactively doing something to help him, that’s just great.”
The Fire Fighters Charity’s Welfare Services team supports individuals, couples and families in the community, covering areas such as social care, advocacy, financial support, home adaptations and equipment provision and bereavement support. With a dedicated team of Welfare Caseworkers and volunteers, the Charity provides this life changing support across the UK, aiming to help families like Reid’s as quickly and efficiently as it can.
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