A three-year-old from Northern Ireland is thriving at home after her mother rejected advice from doctors to have an abortion.
Doctors did not expect Karlie, who was born with Encephalocele – meaning part of her brain was poking through a hole in her skull – to live for more than just a few minutes.
They advised her parents, Gemma-Sarah and Kyle, to consider an abortion.
But they refused to give up on their daughter and now Karlie continues to defy expectations.
Three-weeks after her birth, Karlie underwent a four-and-a-half-hour operation to cut away the protruding part of her brain and close the hole between her eyes.
The brave little fighter was left with a scar running between her eyes, but otherwise made an incredible recovery, leaving medical professionals stunned.
She has since been diagnosed with other health problems, including cerebral palsy and a rare condition called Alobar Holoprosencephaly – which means her brain is fused across the middle and hasn’t divided into the usual left and right hemispheres.
As a result, doctors warned Gemma-Sarah and Kyle that their daughter could be profoundly disabled and would be unlikely to ever walk and talk.
But, again, Karlie has defied all expectations.
Now aged three, she has taken her first steps and is learning to talk. Karlie’s favourite things are Peppa Pig and cheesy pasta “noo-noos”.
Last year, she also became a big sister to Sáorfhláith-Jade.
‘There was no way I was giving up on her’
Recalling events to The Sun, Gemma-Sarah said: “Karlie has defied every expectation so far.
“Every prediction for her has been wrong. If my daughter won’t give up, then I’ll never stop fighting for her.”
Gemma-Sarah and Kyle were excited to be first-time parents.
But when they went for their 20-week scan in Summer 2016, their worlds were turned upside down.
“I was looking forward to finding out the baby’s sex, but the sonographer went really quiet and then went to fetch a doctor,” Gemma-Sarah remembers.
“The doctor told us we were having a little girl, but they’d found a large mass on the front of our baby’s face. It also looked like her brain was severely deformed.
“We were advised to think about a termination. Our baby had no chance of survival.
“Tears were pouring down my face and I was shaking my head. No way. No. Absolutely not.
“I couldn’t get words out so I just carried on shaking my head. There was no way I was giving up on her.”
Medical professionals told Gemma-Sarah that Karlie would most likely die in the womb. They told her to go home and rest, but to come back to hospital if she felt the baby had stopped kicking.
However, her pregnancy continued until November 3, 2016, when at 36-weeks her waters broke.
Even then, though, doctors expected the worst.
“The looks on the nurses’ faces as they settled us into a delivery room said it all,” says Gemma-Sarah.
“Our baby would most likely be stillborn and everyone knew it.
“We were warned that if she was alive, she’d only live for 10-15 minutes – just long enough for a quick cuddle.”
Yet, as Karlie came into the world, she let out a healthy cry.
Gemma-Sarah assumed she was hearing a child in the neighbouring bay until her baby was placed in her arms.
“She was so beautiful. I hadn’t known what to expect. I’d been terrified she would look horribly deformed,” she recalled.
“But she was gorgeous, with her pretty wee eyelashes, rosy cheeks and ten tiny fingers.
“There was no mistaking her problem though. Part of her brain was literally sticking out of her forehead, between her eyes.
“It looked like a small purple ball. I told Kyle it was her wee unicorn.”
Karlie was placed in an incubator next to her mother’s bed and the family were told to say their goodbyes.
But instead of slipping away the baby began to snuffle for a drink.
She was then fitted with a feeding tube and moved to a neonatal intensive care unit where she began filling her nappies.
Whilst there, Gemma-Sarah demanded a second opinion on her daughter’s future.
Dr Mano Shanmuganathan, a surgeon in Belfast, heard about Karlie’s case and sent scans of her brain to experts at Alder Hey Children’s Hospital in Liverpool.
They came up with a plan to cut away the portion of Karlie’s brain that was protruding and Gemma-Sarah decided to proceed and give her daughter the best possible chance at life.
The surgery went well and Karlie made an excellent recovery.
Gemma-Sarah recalled: “I’ll never forget the moment when the porters wheeled her away down a corridor at Belfast’s Royal Victoria Hospital…
“I had no idea if I’d ever see her again.”
“She still has a wee red scar on her face from the operation, but we think she’s absolutely gorgeous, with her blonde ringlets and smile that lights up the room.”
Determined to continue fighting for her daughter, Gemma-Sarah is now planning to attend an international conference on Holoprosencephaly in the USA in Summer 2022.
“My dream is to meet other families with kids with the same condition, and hopefully get Karlie seen by the world’s leading experts,” she says.
“Karlie’s our sunny wee miracle and she’s not done yet!”
