Cranford mum's awareness appeal over toddler's condition so rare GPs hadn't heard of it
Eighteen-month-old Forest is awaiting major surgery to reconstruct his skull
The mum of a Cranford toddler who is awaiting major surgery hopes to raise awareness of his condition - which is so rare even GPs and midwives hadn't heard of it.
Forest Prentice, who is 18-months-old, was diagnosed with sagittal craniosynostosis the day after he was born at Kettering General Hospital.
The extremely rare condition makes the skull grow abnormally and doesn't leave enough room for the brain to grow inside it, and can potentially be fatal because of raised pressure.
Now, with September being craniofacial awareness month, his mum Esme Crawford wants to make other parents aware of his battle so they might pick up on similar issues.
She said: "If speaking out helps one parent out there who might be reading this and has a concern about their child's head then it's worth it."
Forest was born in February 2020 at KGH and, at first, everything seemed okay before staff said they wanted to run checks over concerns about the position of his ears.
Results said his ears were not too low but Esme and Forest's dad, Paul Prentice, were told his head shape was a different and that it wasn't something that could be treated at KGH.
Paediatricians found Forest had a bony ridge on the top of his head and, diagnosed with the condition, he was referred to John Radcliffe Hospital in Oxford.
Esme said: "It was a bit of a shock. We were told when I was pregnant that he wasn't growing properly and we were a bit concerned, so when he was born seemingly perfectly healthy we were elated.
"We were excited to have our baby here so to then be told there was something wrong was a shock.
"I don't think it really sunk in for a few months."
The condition is so rare that even Forest's GPs, a midwife and health visitors hadn't heard of it before.
When a child's brain grows the skull should be able to expand but in Forest's case his skull is unable to grow wider, leaving him with a skull which is long and narrow.
After a series of phone appointments Forest had a CT scan in October which confirmed his condition before a meeting with a multi-disciplinary team, including a neurosurgeon, in December.
He now has check-ups for raised cranial pressure, which can lead to headaches and sickness.
The condition has taken its toll on Forest and his family, affecting their sleep and Forest's speech and language.
Esme said: "It's been really difficult. He doesn't sleep well and wakes up every 60 to 90 minutes through the night which takes its toll.
"His speech and language skills are really delayed and he has only just learnt to point.
"He gets really frustrated - the intelligence is there but he has no way to express it."
Esme has since been told he could have a major operation next month or at the beginning of November to reconstruct his skull, to prevent him from developing permanent disability, blindness and in some cases death.
Now, with her son awaiting surgery, she is doing all she can to raise awareness of the rare condition. Her partner Paul has also raised £8,000 for craniofacial charity Headlines.
Esme said she feels extremely lucky that Forest's condition was picked up straight away, adding that she has heard of other parents fighting for months to be listened to because it's so rare.
She said: "If you have any concerns about your child's head shape or any bony ridges definitely go and speak to your GP.
"It's so rare that a lot of them haven't heard of it but don't let it go."