When it comes to Christmas miracles, Jacob Shaw is a shining example of the extraordinary. His tale is one of quiet heroism from the corridors of Royal Aberdeen Children’s Hospital.
Just like his favourite superhero The Incredible Hulk, the remarkable 13-year-old has stoically fought countless battles with his health over the years, defying the odds time and time again.
With a smile that melts the hearts of everyone he meets, Jacob, who is a patient at Royal Aberdeen Children’s Hospital, will reach another major milestone this year when his devoted mum Kirsty Mair brings him home for Christmas Day.
“Jacob is definitely a miracle,” says Kirsty, who is originally from Macduff but now lives in Tillydrone in Aberdeen.
“There have been so many times that I should’ve lost Jacob but he’s battled through.
“It’s been 50/50 in terms of how many Christmasses he’s spent at home and in hospital throughout his life.
“So to get him home this Christmas, I’ll probably think it’s a dream or something.
“As long as Jacob is happy on Christmas Day, that is the main thing.”
Brave Jacob Shaw’s remarkable journey…
From the moment Jacob took his first breath in the world, he has been a little warrior.
Born with spina bifida, a condition where a baby’s spine and spinal cord doesn’t develop properly in the womb, causing a gap in the spine, Jacob underwent his first operation within the first few hours of his life.
That was to be the first of countless operations that Jacob has undergone throughout his life.
As well as spina bifida, Jacob also suffers from two life-threatening brain conditions including hydrocephalus, where cerebral spinal fluid builds up in the brain.
Jacob has also been diagnosed with Arnold-Chiari malformation where the lower part of the brain pushes down in the spinal canal.
“I was told that I would be lucky if my child would survive the first year of his life,” says Kirsty.
“It was very devastating, but I just accepted it and took every day as it came.
“I just thought, well if that’s the case, at the moment he’s here and we’ll try our best to live our life, even though we were living it in the hospital.”
Jacob smiles through health battles
With difficulties swallowing and breathing, Jacob spent his first years of life being treated between the Royal Aberdeen Children’s Hospital and at the former Yorkhill Children’s Hospital in Glasgow, which is now based at the Queen Elizabeth University Hospital.
Despite facing more health challenges than most adults will experience in a lifetime, Jacob remained his happy little self.
“He was still thriving despite everything that was happening in his life,” says Kirsty.
“Jacob is the most smiley, happiest boy you could ever meet.
“He’s also a little comedian in the making.”
Jacob defies the odds…
Showing incredible strength and resilience, Jacob was finally well enough to be discharged home to Macduff, where his mum was living at the time, and went on to start nursery.
“I was an absolute wreck when he went to nursery as it was a big milestone,” says Kirsty.
“Then he started P1 at Banff Primary School.”
Undergoing major brain surgery…
But over the course of his life, Jacob has had countless operations and life-threatening health complications.
On one occasion, Jacob was rushed into hospital in Glasgow where he underwent major brain surgery.
“Myself and my mum, Alison, paced the corridor for about nine hours until we got the call to say that he had pulled through surgery,” says Kirsty.
“It was the longest day of my life.
“But he got through that and everything was fine.”
‘Jacob loves his nana’
Describing her mum Alison as her rock, Kirsty had her by her side again when Jacob went through pioneering surgery in 2020.
“My boy went back to theatre and they had to insert the shunt from his brain into his gall bladder,” says Kirsty.
“Jacob was actually the first person in Scotland and the second person in the UK to have this surgery.”
With the love and support of his devoted mum and nana, Jacob recovered from surgery and was well enough to go back to school.
Jacob is a fighter…
Last year Jacob suffered from various health complications which culminated in a cardiac arrest.
“At the beginning of March 2023 Jacob deteriorated quite quickly and had a brief cardiac arrest that resulted in him being placed in intensive care in the Royal Hospital for Children in Glasgow, where he was placed on a ventilator,” says Kirsty.
After months in intensive care, where Jacob received a tracheostomy – a tube inserted into his windpipe to help him breathe, he was eventually stable enough to be transferred back to the Royal Aberdeen Children’s Hospital in Aberdeen.
“While all this was happening he was still the cheeky monkey that he’s always been,” says Kirsty.
‘It’s all about making memories’
Jacob has since been transferred to the medical ward at the children’s hospital where he is receiving palliative care.
“A lot of people when they hear the word palliative care, they automatically think ‘oh my goodness, the child is at their end of life’,” says Kirsty.
“That’s not the case, as in palliative care you can still live for a year or three or four years, it just means that there’s nothing else that anyone can offer in terms of treatment.
“So it’s about making memories and that’s exactly what we’re doing.
“We’re just taking it day by day and making memories as we go.”
Jacob to spend Christmas at home…
And this Christmas is going to be extra special for Jacob as he will spend it with Kirsty in their new home in Tillydrone.
“Hopefully Jacob will be discharged home before Christmas,” says Kirsty.
“If not then we’ll take him home for Christmas and then take him back to the hospital.
“As long as I’ve got him home on Christmas Day then I’m happy.”
‘Once you meet Jacob you never forget him’
Reflecting on Jacob’s journey up to this point, Kirsty says she wouldn’t have coped without the support from the Archie Foundation charity.
“If it wasn’t for the Archie Foundation then I would be lost.
“Thanks to the accommodation they provide at the children’s hospital, it meant I could be close to Jacob,” says Kirsty.
“Throughout the whole journey, they have been absolutely amazing.”
Kirsty also pays tribute to her family, especially her mum and Jacob’s two uncles who have been there through thick and thin.
“I would love to say Jacob is a mummy’s boy, but he’s really a nana’s boy,” says Kirsty.
Taking each day as it comes, Kirsty says Jacob, who now attends Orchard Brae School, will forever be her inspiration.
“I don’t know how to describe him if I’m honest, he’s such an inspiration,” says Kirsty.
“Once you meet Jacob, you never forget him.”
Anyone looking for advice or support can visit the Archie Foundation via their website
archie.org/rach
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