A north-east mum whose baby son underwent major surgery, which saw his skull taken apart into “small puzzle-like pieces” and rebuilt, has told of her fight to get him diagnosed.
Alana Brownie says her seven-month-old son Fraser suffered from sagittal craniosynostosis, also known as scaphocephaly, from birth, where a baby’s skull doesn’t grow properly and their head becomes an unusual shape, a condition which affects about one in 5,000 children.
But the 34-year-old mum of three claims medical professionals, including paediatricians, midwives, health visitors and GPs, failed to spot the condition and continued to say her son was fine, despite persistent requests from her to investigate further.
The condition, which it is thought might be genetic, can sometimes result in brain damage or developmental issues.
Alana now wants to raise awareness of the condition, and said: “I don’t think a lot of people know about it, but I would urge anyone who suspects their child could have it to get in touch with their GP.”
What is Scaphocephaly?
Scaphocephaly is the name given to the condition where the skull grows in an abnormal way.
Usually the skull is long from the front to the back and gets narrower towards the back of the head.
The forehead and the back of the head may be more prominent.
The skull is made up of several plates of bone separated by gaps called sutures, which allow the skull to expand as the brain grows.
If a suture closes permanently, normal skull growth is restricted, which leads to the development of an abnormal skull shape.
Alana, who lives in Sauchen, Aberdeenshire, said she had a “traumatic birth” with Fraser, where he came out hand first, meaning she presumed his unusual-shaped head might be because of that.
She said: “I did notice from birth that there was something wrong.
“My son had sagittal craniosynostosis from birth and all the paediatricians, midwives, health visitors and GPs told me my baby was fine.
“Their responses were ‘Don’t worry about it, all babies have funny-shaped heads’.
“I took him to a chiropractor as he was bringing up his wind.
“She agreed with me that I needed to go to the GP and ask for a referral to the hospital.
“That week I went to the GP and said I’m not going anywhere until you refer me to the paediatricians.”
Alana, who is also mum to Ross, 10, and Scott, 8, was told it would be a nine-week wait to be seen and so eventually got a second referral from the GP to be upgraded as urgent.
However, after waiting nine weeks, she was told her son would need an MRI scan to investigate further, something it turned out he did not require.
It was only after investigating online and finding a support group for children with the condition that Alana became convinced that was what her son was suffering from.
She said: “Everywhere I looked surgery had to be done between four and six months and at that point he was five months.
“A lot of people were saying he didn’t need an MRI, he needs a CT scan and to see a neuro-specialist.”
Keep up to date with the latest news with The Evening Express newsletter
From the support group, Alana tracked down another woman whose son had got the same procedure done in Glasgow and she put her in touch with the surgeon.
From there, she got in touch with NHS Grampian to get referred to see the surgeon in Glasgow, who saw Fraser on June 21.
She said: “I went to the clinic and took him out the buggy and there was no CT scans or anything, he just said ‘Yes, he definitely has it’.”
Fraser underwent major surgery at the Royal Hospital for Children in Glasgow on August 29 which saw his skull removed and put into “small puzzle-like pieces” before being rebuilt with plates and screws.
Alana, who works as a project co-ordinator in the oil industry, said: “They removed his forehead and sorted it out, they turned it 180 degrees.
“He was in for four hours. Every child that goes through the procedure needs a blood transfusion.
“He was back on the high dependency ward for 24 hours after and we got home last Monday so they’re super happy.
“I’m really happy with the outcome, and I can never thank the surgeon and staff enough for what they have done for Fraser.”
Although Fraser’s major surgery went successfully, Alana said “no parent” should have to fight to have their concerns listened to.
She said: “I’m just glad that somebody listened to me.
“If I hadn’t got him treated or diagnosed then his brain would have been growing, but the skull bones are fused so his brain could have been crushed – which means he would have developmental delays and he would have been left possibly brain damaged.
“It has taken over my life, I haven’t really enjoyed my maternity leave. I was crying every second or third day.
“The people I felt were meant to be helping me, I didn’t feel were listening to me.”
A NHS Grampian spokesman said: “As a health board we cannot comment on individual patient cases, but would strongly encourage Ms Brownie to contact us regarding any concerns she has.”