Amber McRa, 5, spent last Christmas in hospital away from her family for six weeks after undergoing a gruelling and risky skull expansion surgery to save her life
A five year old girl will be spending Christmas at home with her family this year, after enduring a life-threatening condition that required 29 surgeries and kept her in hospital over the last festive period.
Amber McRae, from East Kilbride, Scotland, had to undergo a risky skull expansion surgery due to her conditions of spina bifida and hydrocephalus. The operation was her last hope to reduce the pressure in her head and save her life. Her mother, Leanne Belch, stayed by her side throughout, with her father Paul and older sister Laila visiting daily.
The family lived in fear that Amber might not survive, but she will be home for Christmas this year. “My daughter Amber spent last Christmas in hospital after having her 29th surgery,” Leanne shared.
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“It was a risky operation, and we didn’t know if she would make it. Amber is only five years old. I was shaken to the core. 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.”
When Amber woke up after her surgery, she was heartbroken to find her long brown hair had been shaved off: “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 gruelling process and Amber was in severe 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.”
The family received support from charity Spina Bifida Hydrocephalus Scotland (SBH Scotland) during this distressing period – and says their help “meant the world.”
“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.”
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: “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 supporting SBH Scotland’s Christmas Appeal, which will help ensure that families like Leanne’s have the support they need to navigate challenging times this Christmas.
Lawrence Cowan, CEO 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 £1.4 million 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.”
To donate to SBH Scotland’s Christmas Appeal and support families just like Leanne and Amber’s this Christmas, click here .
