East Kilbride girl who spent last Christmas in hospital after 29th surgery hopes to spend festive period at home

A five-year-old girl, who spent last Christmas in hospital following her 29th surgery, is hoping to spend the festive period at home this year.

Amber McRae from East Kilbride lives with spina bifida and hydrocephalus, which is a condition where cerebrospinal fluid (CSF) builds up in the brain, causing increased pressure in the skull.

In December 2023, the five-year-old spent six weeks in hospital after undergoing life-saving skull expansion surgery to relieve the pressure.

Leanne Belch remained by her daughter’s side throughout the ordeal.

Amber McRae underwent life-saving surgery last December. Spina Bifida Hydrocephalus Scotland

Although Amber’s dad Paul and her big sister Laila visited daily, it was heartbreaking for Leanne to watch them leave each day and for the family to be apart at this special time of year.

Due to the risky nature of the operation, the schoolgirl’s family were worried she may not survive.

“I was shaken to the core,” said Leanne. “It was a really high-risk operation and there was no guarantee that she would survive it, but at that point we had run out of options.”

“The wait to see Amber after the operation felt like torture. Walking into recovery and seeing my little girl with tubes coming out of her, her hair shaved off, and her head had been cut open from ear to ear was the hardest thing, as a mum, to see.”

Amber was left devastated when she realised her long brown hair was gone.

Due to the risky nature of the operation the schoolgirl's family were worried she may not survive. — Due to the risky nature of the operation the schoolgirl’s family were worried she may not survive. Spina Bifida Hydrocephalus Scotland

Her mum said: “When Amber saw that the doctors had shaved her head, she burst out crying. Every time she looked in the mirror afterwards, she would cry about losing her hair. She didn’t recognise herself.”

Recovering from the operation was a long and arduous process and Amber was in a lot of pain.

Leanne said: “Spending those days in hospital after Amber had surgery was horrific. She had metal rods in her head that were turned each day to expand her skull, and she was screaming in bed in pain. It was traumatic to watch and was traumatic for Amber to have to experience that pain. It’s nothing any child should ever have to go through. I was utterly devastated and worried what life was going to be like for her after this procedure.”

Despite their ordeal last Christmas, the family were thankful for the support of charity Spina Bifida Hydrocephalus Scotland (SBH Scotland).

Leanne said: “When we were in hospital over Christmas, Karen and Mel from SBH Scotland came up with bags of Christmas gifts and I remember them walking in the room and I got so emotional. Seeing their caring faces at this time and knowing they were thinking about us meant the world to me.”

“As the mum of a child with spina bifida and hydrocephalus, it is really emotionally draining. It can be a very scary journey; you never know what’s around the corner.

“SBH Scotland has been in our lives since Amber was six weeks old. From the first call they understood what I was going through, and they’ve been with us every step of the way since.

“The support they give means Amber can forget about operations and focus on playing with her friends at their family support groups.”

Amber hopes to spend the festive period at home this year. Spina Bifida Hydrocephalus Scotland

Since last Christmas, Amber has returned to SBH Scotland’s groups and is back having fun with her friends at SBH Scotland’s family groups, which has been crucial to her recovery.

With Christmas looming, Leanne can’t help but think back to everything they went through last year.

Amber’s mum explained: “Last Christmas was horrific, and we were all split up. This Christmas, I’ll be very emotional, thinking back to last year which was really tough.”

The family are now looking forward to happier times and hope to be together this festive season. SBH Scotland’s Christmas Appeal will help ensure that families like Leanne’s have the support they need to navigate challenging times this Christmas.

Lawrence Cowan, chief executive officer at SBH Scotland, said: “There are many children like Amber across Scotland who need our support and assistance more than ever this year.

“SBH Scotland needs to raise £1.4m each year to ensure we provide essential support services to those living with spina bifida and hydrocephalus. These crucial services rely on donations to survive.

“Please donate to our Christmas Appeal to make sure families like Amber’s get support in the face of challenges this Christmas. Your support isn’t just a donation – it’s the strength needed for a child to overcome a lifetime of challenges. A chance for our children and families to feel unstoppable. Any amount you can give will have a big impact – ensuring no one is left to cope alone at Christmas.”