James’
craniosynostosis story began in 2021, at just eight weeks old. His health visitor noticed that his head was growing in the front and back but remained flat on the sides giving it an elongated appearance. Acting on advice from the health visitor, Louise went to their family GP and successfully sought a referral. A short delay later due to the pandemic, they were seen by the first paediatrician and received diagnoses of “a large head”. James’s head was indeed measuring larger than normal, and Louise wasn’t satisfied with the request to see him again in 6 months, so she sought a second opinion.
She said,
“I’m a little bit of a geek. I quite like research and when I was investigating the symptoms, it kept coming up with Craniosynostosis, a condition I’d never heard of before. We had to seek a second opinion as we were unhappy with the diagnosis of simply ‘a large head’. During the appointment with the second paediatrician we had to be quite firm and ask them to explain why it was not craniosynotosis. This is when the paediatrician agreed to a referral to Leeds.”
Feeling like they were just about at their wit’s end and preparing to fight for their son’s health again, the family visited the Leeds specialist craniofacial team.
Within four weeks, Louise’s suspicions were confirmed and James was diagnosed with craniosynostosis. They were then officially referred on to the Crainiofacial Team at LGI where they met Steeper Cranial Orthotist, Kate Chauhan. Louise said,
“We met Kate in the corridor and she was the first person that spoke to me. I was apprehensive as you can imagine. I didn’t know what we were going into, whether we’d have to fight our case again, or whether were we going to be believed this time. But Kate put me at ease before I even got into the room.”
Craniosynostosis is a rare medical condition in which one or more of the sutures in a baby’s skull fuse too early, altering the natural growth of the head. As a result, the baby’s brain may not have enough space to grow properly, leading to potential developmental issues and increased intracranial pressure.
The condition affects roughly 1 in every 2,500 babies and is sadly often misdiagnosed. They finally had a diagnosis and knew they had to act fast. The craniofacial team and Kate presented the family with three treatment options:
- An immediate craniectomy followed by STARband helmet therapy until the age of 18 months,
- Two rounds of surgery to have springs fitted into the skull and subsequently removed later on,
- Or a full cranial vault reconstruction at 18 months old.
As with any medical procedure, each option came with its own risks and considerations. Not only did they want the best possible outcome for James, but they also had to consider the effects the experience would have on his older brother, William. Louise said,
“William’s not much older than James, and although James is still in his helmet now at 18 months old, we’re hoping that in the future, neither of them will remember it in a negative way. Whereas if we’d gone with cranial vault reconstruction, he’d be due to have the surgery now and I think It would’ve been hard for a four-year-old to see his little brother go through that, compared to a two-and-a-half-year-old. But that’s part of why we chose to go with Steeper and the helmet therapy.” A decision that would reshape not only James’s head but his entire life trajectory.