A Blairgowrie baby girl will be spending her first and possibly last Christmas at home with her family.
Amber-Jade Gourlay has been unable to grow and take in nutrition since she was born in October 2020.
Doctors have attempted to diagnose and treat the baby’s condition, but all attempts have been unsuccessful.
On Friday, doctors told mum Kayleigh Thompson and dad Graeme Gourlay baby Amber-Jade may not survive beyond the next month.
After spending almost all of her life in Ninewells Hospital, the 14-month-old will be spending what will likely be her final Christmas at home with her parents and five siblings.
‘Failure to thrive’
Kayleigh, 34, said the tot faced many issues right from her premature birth last year.
She said: “She was born at just under 25 weeks and spent spent seven and a half months in the newborn intensive care unit.
“She was born in October, so she spent her first Christmas there too.
“In the last 14 months, she’s spent all but four or five weeks in hospital.
“Every time we’ve tried to take her home, it’ll be a couple days and she’ll need to go back.”
Doctors have been unable to diagnose and treat Amber-Jade’s condition, labelling it a “failure to thrive”.
“She just doesn’t grow or gain weight at all,” said mum Kayleigh.
“She’s just under nine pounds now.
“The hospital have tried every single option and there’s nothing left they can do for her.
“So we’ve just been told that we just have to make the most of whatever time we’ve got left.
“The slightest cold could kill her, she has absolutely no reserves.”
Last ditch effort in Aberdeen
Despite being home for Christmas, Amber-Jade still requires round the clock care.
Mum Kayleigh added: “They don’t have a name for her condition.
“She has severe brain damage and she is severely disabled, but they don’t have a clue about the weight and growth problem.
“We’ve always known since day one that she’s really struggled to gain weight but last Friday we found out there’s nothing more they can do for her.”
Amber-Jade’s mum and dad travelled to Aberdeen for a last-ditch procedure at the Royal Aberdeen Children’s Hospital earlier this month.
Kayleigh said: “They tried to give her TPN (total parental nutrition) but there was something wrong with her airways so they couldn’t put her to sleep.
“She was too unstable and her heart rate was going, so they had to stop the procedure.”
After hearing the heartbreaking news herself, Kayleigh then had to tell Amber-Jade’s five siblings that the tot will not live much longer.
“We had to explain to them,” she said.
“We didn’t at first, but we explained to them after we knew there was nothing more they could do. It wasn’t the easiest.
“The three boys are old enough to understand and they’re really struggling.
‘She’ll be a star’
“The girls don’t really understand so we told them one day she’ll be a star. I think that’s the nicest, most comforting thing to say to them.”
Now the family hope to create as many memories as possible while keeping young Amber-Jade safe.
Kayleigh said: “On Christmas Day, we’re just going to spend it at home and keep her as safe as possible.
“We don’t want her to end up back in hospital with Covid.
“We were told she doesn’t have much time left, so we want to keep her safe but we also want to make memories with her so we have something to look back on.
“I don’t want to regret not doing things while she’s still here.”
At 14 months old, Amber-Jade has barely met anyone outside of her immediate family.
Kayleigh added: “She has met very few people.
“We did plan to have a first birthday party for her but the hospital staff said it wasn’t safe for her to meet all these people.
“She’s roughly stable now in comfort care – she has chronic lung disease so we have to be really careful with who she meets and when.
“We at least want to give the kids a Christmas with their sister.”
‘They’re scared to bond with her’
Amber-Jade’s siblings – Junior, 12, Rhys, 10, Bradley, 9, Maddison, 3, and two-year-old Darcie – initially struggled with having the poorly baby home for the holidays.
Previously, she couldn’t stay longer than a couple days before needing medical attention.
“The kids struggled at first,” said Kayleigh.
“Since she’s been in hospital so much, they don’t really know her.
“I think they’re happy now, but I think they’re scared if I’m honest.
“They’re scared of getting to close to her, they’re scared to bond with her too much.”
The Blairgowrie resident hopes to make one special memory in particular with her youngest daughter.
The family are currently raising money to fund any memorable experiences Amber-Jade is able to take part in.
“She can’t move anything waist down and she has a leg condition that means her feet stick out like little fins – so we call her our little mermaid,” Kayleigh said.
“Part of Your World has always been her song so we’d really like to go for a mermaid experience at Deep Sea World.
“We just want to make as many memories as possible, we don’t really have a set plan or anything because you can’t really plan anything for being in hospital constantly.”
People can donate to the family fundraiser here.
