It’s an unfortunate reality of life that not all babies develop “properly”, and many mothers are given the devastating news that their baby will die will in the womb or shortly after birth. This reality was faced by Karlie Toland’s parents after she was born with her brain outside of her skull.
Her parents were told that she would only live for 20 minutes because of the severity of her condition, which was caused by five separate issues, including encephalocele. However, little Karlie fought through her illness and has now made a miraculous recovery.
To discover what happened to a baby whose brain grew with his skull, check out the video below:
After defying the odds to survive for longer than doctors expected her to, Karlie was taken to Belfast’s Royal Hospital for Sick Children by her parents Gemma Mccusker, 24, and Kyle Toland, 20, and underwent a five-hour operation to repair her outside brain tissue.
The now 17-month-old is able to crawl, eat on her own, and her parents are looking forward to her taking her first steps.
Mccusker, a full-time mother, said, “Looking at her now makes me so proud, she’s always smiling, laughing and happy, she’s such a little miracle.”
“We don’t know what the future holds for Karlie, but we are sure she will continue to defy the odds.”
“I was told my daughter would die within 20 minutes,” Mccusker said of Karlie’s condition. “I was heartbroken and although she had part of her brain outside of her skull, she looked perfect.”
“But she refused to give up, and we knew she was strong enough to pull through despite everything we were told by doctors.”
“After being discharged from hospital, we went home with Karlie and used bottles of sterile water at room temperature and cotton swabs to wipe away the brain fluid leaking from her skull.”
“We had been told Karlie would die in the next few days, but she defied everyone, and once we got a second opinion four weeks later, she had the operation she desperately needed,” the toddler’s mother continued.
While pregnant, Mccusker was told that her baby would be born with deformities, but no one anticipated her being born with her brain outside her skull.
“During my pregnancy, I was told at my 20-week scan there was something abnormal on her head, but we had no idea what it was until she was born,” the 24-year-old said.
Doctors then told Mccusker the kind of deformities which her baby might be born with, however, they did not once mention Karlie’s brain.
“I was told to prepare myself for missing limbs, her nose to be on her forehead and that she might not even have eyes,” Mccusker revealed. “But Karlie had none of those deformities and was born with all of the correct facial features and limbs.”
In addition to encephalocele, the 17-month-old was born with cerebral palsy; an abnormal brain structure, called holoprosencephaly; a missing chromosome, known as 22 deletion syndrome; and microcephaly, which has caused the toddler’s head to be smaller than normal.
Because Karlie’s health problems are unusual, it’s not known how they will affect her later in life.
“We’ve been told by doctors that Karlie is a miracle to be alive and she really is,” Mccusker said.
“She has proven everyone wrong and even after her major operation in December 2016 she was only in hospital for 48 hours before coming home.”
“Although no one expected her to progress as her brain doesn’t have the normal three structures, so far she is on par with other children her age,” Karlie’s mom continued.
“The only thing she is delayed with is her walking, but she can stand if I told her hand so I don’t think we’ll need to wait much longer.”
Karlie’s parents credit her survival to the skill of Dr. Mano Shanmuganathan, a neurosurgeon at Belfast’s Royal Hospital for Sick Children.
“We are so thankful to Dr. Mano that he never gave up on our daughter,” Mccusker said. “His surgery saved her life and given us a future with Karlie.”
We would like to take this opportunity to wish Karlie and her family all the best. Her miraculous survival is a testament to the fact that there is always hope, even in the bleakest of circumstances.