When Kylie Spinks and twin sister Adlen were born 14 weeks early, it was the start of a 16-plus year journey for Kylie, who was born with cerebral palsy, intussusception, hydrocephalus and cortical vision impairment.
Just days after birth, Kylie began experiencing brain bleeds, but recovered and was discharged home after spending 95 days in her local hospital’s neonatal intensive care unit. “We quickly got her doing physical, occupational and speech therapies, so she really overcame a lot,” said Kylie’s mother, Vera Spinks. “When she was about 3 years old, that all changed.”
Kylie was hospitalized practically every month for a seizure disorder. She underwent her first neurosurgery, but after a spinal fluid leak was discovered, she was transferred to Children’s of Alabama. Surgeons at Children’s closed the leaking incision, but it wasn’t an easy fix. Kylie was hospitalized for two months, and after multiple surgeries, she received a shunt for her hydrocephalus. “There’s no cure for hydrocephalus. There’s only treatment,” Vera said. “That treatment is surgery, which can happen very often.”
Over the course of her childhood and early teens, Kylie has had more than 40 surgeries, with most being related to her shunted hydrocephalus. “She has been in and out of Children’s so many times,” Vera said. “With each neurosurgery, we hoped it would be the last, but it just never was. What made it harder was that Kylie’s body didn’t present issues normally. With her, it has always been much harder to really see when something is wrong.”
One day, Vera realized something was wrong – Kylie’s shunt valve was malfunctioning. Surgeons replaced the valve, but Kylie still felt unwell. Doctors replaced the valve a second time, but again, she didn’t improve. “She wasn’t getting better with anything,” Vera said. “Thankfully, Kylie had an incredible nurse, Nadine Bradley, who knew her for years and got to know Kylie and her symptoms. She saw we needed to dig deeper.”
Nadine and doctors discovered that Kylie’s heart could no longer accommodate the ventriculoatrial (VA) shunt, and it needed to be moved to her abdomen. “It was one of those things where we didn’t know what would happen and if it would work,” Vera said. “But, thankfully, it worked. Kylie went from having frequent, sometimes almost daily surgeries, to coming home four days later and back to our ‘Smiley Kylie.’”
Not only has Kylie experienced life outside of Children’s, she has also returned to her favorite pastime – racing as an assisted athlete in 5Ks and half marathons. In addition, Kylie recently checked off a teenage rite of passage – attending her junior prom. “Kylie isn’t defined by her diagnosis. She never has been,” Vera said. “Everyone at Children’s was so invested in getting her well so that she could experience life. It means something to have people like that who stand by you and are there for you.”