Calendar An icon of a desk calendar. Cancel An icon of a circle with a diagonal line across. Caret An icon of a block arrow pointing to the right. Email An icon of a paper envelope. Facebook An icon of the Facebook "f" mark. Google An icon of the Google "G" mark. Linked In An icon of the Linked In "in" mark. Logout An icon representing logout. Profile An icon that resembles human head and shoulders. Telephone An icon of a traditional telephone receiver. Tick An icon of a tick mark. Is Public An icon of a human eye and eyelashes. Is Not Public An icon of a human eye and eyelashes with a diagonal line through it. Pause Icon A two-lined pause icon for stopping interactions. Quote Mark A opening quote mark. Quote Mark A closing quote mark. Arrow An icon of an arrow. Folder An icon of a paper folder. Breaking An icon of an exclamation mark on a circular background. Camera An icon of a digital camera. Caret An icon of a caret arrow. Clock An icon of a clock face. Close An icon of the an X shape. Close Icon An icon used to represent where to interact to collapse or dismiss a component Comment An icon of a speech bubble. Comments An icon of a speech bubble, denoting user comments. Ellipsis An icon of 3 horizontal dots. Envelope An icon of a paper envelope. Facebook An icon of a facebook f logo. Camera An icon of a digital camera. Home An icon of a house. Instagram An icon of the Instagram logo. LinkedIn An icon of the LinkedIn logo. Magnifying Glass An icon of a magnifying glass. Search Icon A magnifying glass icon that is used to represent the function of searching. Menu An icon of 3 horizontal lines. Hamburger Menu Icon An icon used to represent a collapsed menu. Next An icon of an arrow pointing to the right. Notice An explanation mark centred inside a circle. Previous An icon of an arrow pointing to the left. Rating An icon of a star. Tag An icon of a tag. Twitter An icon of the Twitter logo. Video Camera An icon of a video camera shape. Speech Bubble Icon A icon displaying a speech bubble WhatsApp An icon of the WhatsApp logo. Information An icon of an information logo. Plus A mathematical 'plus' symbol. Duration An icon indicating Time. Success Tick An icon of a green tick. Success Tick Timeout An icon of a greyed out success tick. Loading Spinner An icon of a loading spinner.

Craniosynostosis: Call for greater help for rare newborn health condition

A baby girl wears a cranial remoulding helmet, which can be used to treat cases of craniosynostosis where surgery is not required.

Scottish babies eligible for specialist surgery on a rare skull condition are waiting too long for referrals to NHS England, it has been claimed.

Around one in 2,000 newborns have some form of craniosynostosis, where the bones in the skull fuse too early, with a risk of causing brain damage.

It typically requires invasive surgery to correct, where parts of the child’s skull are removed and then replaced “like a jigsaw puzzle”.

Glasgow children’s hospital is the only place in Scotland equipped to perform the procedure, but two hospitals in England have trained staff in a keyhole surgery equivalent.

Studies in the US have shown this can lead to faster recovery times and less blood loss.

But, due to the short window of time available in which to carry it out, concerns have been raised that referrals down south are taking too long.

‘Not much time’ to complete process

Great Ormond Street Hospital is one of five specialist clinics in the UK offering craniosynostosis surgery.
Great Ormond Street Hospital is one of five specialist clinics in the UK offering craniosynostosis surgery.

One north-east mum, whose son received a referral to Great Ormond Street Hospital for craniosynostosis surgery and is now recovering well, said: “Everyone was so helpful, don’t get me wrong – but it just took time.

“Because he was so young, the less invasive option can only be done before they’re four to six months.

“So there’s not much time to be pursuing paediatricians, CT scans and neurosurgery – and then we were referred to Glasgow.

“There’s lots of process, so the normal route doesn’t allow for much speed.”

She added: “It seems quite a problem everywhere, that the processes are heavy and not that streamlined to get him there quickly enough for it to be an option.

“It was just the option we wanted – it isn’t a better operation or outcome – it’s just about having the choice.”

Window of opportunity ‘very small’

Alexander Burnett
Alexander Burnett

The matter has been taken to the Scottish Government by Aberdeenshire West MSP Alexander Burnett.

He said: “The window of opportunity for an endoscopic procedure to be effective is very small.

“There needs to be a more efficient, expedited referral process to allow babies to be assessed and operated on by four-to-six months through Great Ormond Street Hospital (Gosh).”

A Scottish Government spokesman said there are no plans to offer endoscopic craniosynostosis surgery north of the border, but there is an “agreed referral pathway” to Gosh in place.

“Each referral is carefully considered on a case-by-case basis,” he added.

“Clinicians will be aware of time sensitivities when deciding on the most appropriate treatment plan.”

Already a subscriber? Sign in

[[title]]

[[text]]