Watch: Girl with hydrocephalus undergoes surgery to rebuild her skull
A girl who was born with a rare brain condition has undergone life-changing surgery to rebuild her skull and is now doing well at home.
When Kaylee Morley was born she weighed a relatively average 7lb, but her head alone accounted for five of those seven pounds.
That’s because Kaylee, now five, was born with a condition called hydrocephalus that causes a buildup of fluid in the brain.
“Her head was like a watermelon on a toothpick,” Kaylee’s mum, Deborah Spreitzer, explained.
“She couldn’t hold her head up if she tried. And if you held her, your arm would go numb in about 30 seconds. It was very bad.”
Normally, cerebrospinal fluid (CSF) – a clear fluid found in the brain and spinal cord – drains to other areas of the body where it can be absorbed.
But Kaylee’s brain’s ventricles dilated and clogged, causing the fluid to rapidly build up, putting pressure on her fragile, still-developing brain.
Doctors said it was one of the most severe cases of obstructive hydrocephalus they have ever seen.
Soon after she was born, a Cleveland Clinic Children’s surgical team inserted a shunt into Kaylee’s head, which effectively drained the CSF.
But because her skull had grown to accommodate the fluid, Kaylee’s head now had too much bone, which began to overlap without the fluid there to hold it up.
While Kaylee’s head was now smaller and her brain was growing, her skull remained abnormally shaped and too heavy for her neck to control.
“The main problem when a baby has such a big head is lack of head control,” paediatric craniofacial surgeon Bahar Bassiri explained. “The head is so heavy that the baby cannot even sit.
“That means the child cannot function. And everything, developmentally, gets delayed.”
That was one of the most heartbreaking aspects of Kaylee’s condition for her mother, who is also mum to Ella, 12, and Dylan and Braydon, eight-year-old twins.
“I know all the little milestones that your baby is supposed to hit. And she wasn’t hitting any of them. It was very, very sad,” explained Spreitzer.
On Kaylee’s first birthday, on 26 February, 2016, she had an eight-hour procedure, again at the Cleveland Clinic, to effectively take her head apart and put it all back together again.
The operation involved the surgery team painstakingly removing each bone, separating them, then, much like building a puzzle, moulding the shape of each bone so they would fit back into Kaylee’s ‘new’ head.
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After eight agonising hours, Kaylee’s family were relieved to see she had a well-rounded, average-sized head and following four days recovering in hospital she was allowed home.
“She was smiling and lifting her head up and had a look on her face like, ‘Wow, I can move my head’,” Dr. Recinos, one of the surgeons who performed the operation recalls her saying.
“Literally, a great weight had been removed from her.”
In the following years, with help from physical, occupational and speech therapists, Kaylee has been working to catch up on the developmental milestones she missed out on in year one.
She can now walk unaided, sit up by herself, ride a tricycle and is able to play with her siblings.
Looking back on the journey her daughter has gone through Spreitzer said: “We’ve watched her grow from this tiny, fragile, helpless little baby to this crazy five-year-old running around with her brothers and sister.
“I never imagined in a million years that this type of surgery was even possible. The surgeons, the whole team, they’re part of our family now. They’re just the best.”