Five year old Amber McRae is set to enjoy Christmas at home with her loved ones this year, following a harrowing previous year spent in hospital battling a life-threatening condition that necessitated 29 surgeries. Last festive season saw Amber unable to join her family celebrations as she was confined to the hospital for six weeks.
The courageous youngster from East Kilbride, Scotland, has endured a daunting and perilous skull expansion surgery due to her conditions of spina bifida and hydrocephalus, with the procedure being her final hope to alleviate cranial pressure and potentially save her life. Her mother, Leanne Belch, remained steadfastly by her side throughout, while her father Paul and older sister Laila made daily visits.
The family faced the terrifying prospect that Amber might not survive, but now she’s set to be home for Christmas. Leanne said: “My daughter Amber spent last Christmas in hospital after having her 29th surgery. 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.”
The shocking moment came as Amber awoke from surgery and realised her long brown locks were gone: “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.”
Recuperation was gruelling for Amber, with agony accompanying her recovery, 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.”
The harrowing experience left her mother distraught, fearing for Amber’s future prospects following the operation: “I was utterly devastated and worried what life was going to be like for her after this procedure.”
However, the family wasn’t alone; they received support from Spina Bifida Hydrocephalus Scotland (SBH Scotland), which provided invaluable assistance during these harrowing times, 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.”
Coping as the mother of a child with spina bifida and hydrocephalus is tremendously challenging, creating a journey filled with fear and uncertainty, but SBH Scotland has been a steadfast supporter since Amber was six weeks old: “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.”
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.”
They 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.”
Leanne said: “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, visit: https://www.sbhscotland.org.uk/christmas.
