Albie James-Parker was born on November 26 last year to Vanessa and Louis and will undergo surgery after he was diagnosed with Sagittal Craniosynostosis – a rare condition affecting just one in 2,500 births
A baby boy will undergo surgery to rebuild his skull after it fused together when he was in his mum’s womb.
Albie James-Parker was born on November 26 last year to Vanessa and Louis.
They immediately noticed a small bump running along the top of his head, and they didn’t think much of it as the doctors didn’t mention it when he was born.
Vanessa told SuffolkLive : “She knew something was wrong but told us she wasn’t quite sure what.
“It was a bit of a concern, so she suggested seeing the doctor, who also wasn’t sure either but agreed it wasn’t quite right.
“Neither of them had seen it before, and it was only when we went to West Suffolk Hospital for a CT scan that we met someone who had.”
It turned out Albie has Sagittal Craniosynostosis – a rare condition affecting just one in 2,500 births.
Newborn babies have flexible material called sutures that hold parts of their skull together. As they grow the skull is able to expand at the same rate as the brain.
Craniosynostosis is a defect where the bones in the skull join together too early and as the brain grows the skull can become misshapen.
Sagittal Craniosynostosis is the most common form of the defect and is what Albie has, where the sagittal suture fuses before birth.
Vanessa added: “It was just more worry for us.
Doctors don’t yet know what causes this condition, it could be genetics, the medication the mother may be on, positioning in the womb or birth complications.
Plenty more research needs to be done on the condition which is why Vanessa and Louis are so passionate about fundraising.
If your baby has a strange shaped head, a raised ridge or bump and you’re worried, go to your doctor for advice.
It is important to remember that as Craniosynostosis is very rare many medical professionals may not have seen it before.
The key to effective treatment for the condition is catching it early as the surgeries are increasingly harder as the child develops and the skull fuses.
“Being first-time parents during a global pandemic and going into lockdown a couple of weeks after his birth we just went into a state of shock.
“We were just taking it day by day and not knowing what was going to happen.
“We are lucky that the fusion doesn’t affect Albie’s health, but if he doesn’t have this surgery there’s a 15 per cent chance he could begin to suffer from issues such as pressure on the brain, eyesight, balance, learning difficulties and more.
“However it is harder to correct this as they get older so even though it is risky, now is the right time.”
The baby boy will have his surgery in Oxford at one of the only hospitals in the country that is able to do the operation.
Surgeons will have to take his skull apart in order to rebuild it.
It is a risky surgery for an eight-and-a-half-month-old to have so close to his brain.
Most people don’t notice the shape of his head unless Vanessa points it out, but the skull appears squished from the side and narrows at the front.
Vanessa and Louis initially struggled to find support for their rare situation, but eventually found Cranio Ribbons – a support group for children with Craniosynostosis.
Kelly, the founder, set it up after her son was diagnosed with the condition.
She sends out care packages to each child before surgery, which includes a warrior bear toy.