Olivia’s Triumph Over Epilepsy
From Sleepless in Queen Creek to Swimming Pool Adventures
It’s something that stays with Olivia’s parents. A message they feel compelled to share with others facing a similar journey. Their spirited, caring, intelligent 11-year-old daughter battled epilepsy for six long years before a renowned epileptologist at Phoenix Children’s Hospital helped changed all of their lives. Beginning with sleep.
“We had no idea an epileptologist even existed, much less a pediatric epileptologist,” says Dustin Bailey, Olivia’s father. He’s an earnest, thoughtful man who pulls out video and images to share. “You can’t really understand Olivia’s story unless you get to know her,” he says with pride, his voice quavering. He and his wife of more than 20 years, Heidi, who speaks in medical jargon with practiced savvy, are dedicated parents to five children. His professional life in academia and Heidi’s formal training in forensic science give them expert insight into mind/body issues. Together, they’re uniquely equipped to navigate their daughter’s serious disorder.
“We thought we were getting her the best care possible. As much research as we did, we also trusted our doctors.”
And then, just when things looked as bleak as they ever had for Olivia, one of those doctors retired. And “providence,” Dustin believes, brought them to Dr. Angus Wilfong at Phoenix Children’s Hospital, who changed all of their lives by giving them the greatest gift of all – hope.
Sleepless in Queen Creek
It all started when Olivia was just four. Spunky, with a skyrocketing IQ, their youngest, precocious daughter told her mom she was going to faint at their grandmother’s house in Pinetop.
“We found her lying on the ground, and she couldn’t get up – she said she was stuck.” They landed in a nearby ER that night and discovered Olivia had suffered a seizure. In short order, she would go on to suffer 108-120 seizures a day that would leave her dazed but conscious and landed her in the ER again three weeks later on July 4th, 2011. Her parents found care for Olivia at a local facility, where she was diagnosed with epilepsy.
Epilepsy is the most common childhood neurological disorder. Some 400,000 children in the US suffer from epilepsy, marked by recurrent seizures that can place limitations on a child’s cognitive, social and physical abilities. To make things even harder, there is often a social stigma surrounding epilepsy, as sometimes the episodes can be scary to others. Epilepsy can be caused by traumatic brain injury, genetics, or infections; and sometimes it can be difficult to identify the source.
Epilepsy causes disruptions in the brain’s circuitry and can cause long-term challenges. Some seizures, known as grand mal, cause the body to clench and then thrash in uncontrolled movements; other times seizures appear as though the child is in a daze, similar to those Olivia experienced.
“From day one Olivia had incredible ‘auras,’ so she could always tell they were coming on,” said Dustin. He reports auras are warning sensations that sometimes precede seizures — similar to the feeling of a sneeze coming on. He says epilepsy is a different experience for everyone, and no seizures are alike. Olivia suffered frontal lobe seizures often at night; she would turn her head to one side and reported seeing a cat. So her creative father put a stuffed dog on one of her bedposts, to remind Olivia he would “chase” the cat away.
For the next several years, her life would be constrained by the limitations that go hand in hand with the struggles and risks associated with seizures. It was difficult to worry about the potential of having a seizure at school. Not because she couldn’t take it – Olivia had proven formidable in her resilience.
She was just worried about everyone else.
Night-time was even worse.
Parents of newborns quickly adapt to bleary-eyed midnight feedings. But most babies find their way to night-time slumber in a few months’ time. Now imagine your 4-year-old is suddenly up a dozen times a night. And because there is a risk that a seizure can stop her from breathing, as parents they learned to sleep with one eye open, to soothe her through the seizure, keep a careful recording. Lack of sleep is also a trigger for seizures, so the cycle was a continuous loop, taking a toll on Olivia’s physical, emotional and cognitive wellness.
The Baileys navigated the journey of 24-hour vigilance for six long years, with not much sleep in sight. But they say Olivia never lost her smile.
Survival Mode: A Family Affair
“You learn to adjust your expectations.”
That’s how Heidi says she and Dustin have managed to juggle the demands of five children (another of whom also has special challenges to navigate), work, and Olivia’s round-the-clock needs.
“We had to trust the people around us.” Heidi somehow managed to return to school for a degree during Olivia’s journey and tasked their older children (20, 19, 18 and 16) still living at home to shop, cook and clean.
“We learned what to really prioritize. That meant figuring out we were only going to do laundry once a week,” says Dustin. “And, that choosing paper plates was a lot easier than staring at piles of dishes that never got done,” adds Heidi without skipping a beat. “Or, just not caring whether they get done!”
Many marriages don’t survive the pain and stress of coping with a chronically ill child. But one thing is clear about this formidable couple — they’re in sync. They’re in this together, and giving up isn’t an option, even though for years they say they felt like two friends living together and raising kids. “I love Heidi because I decided to. Nothing she can ever do would make me stop. I have a God who loves me, and I’m going to keep loving her, no matter what.”
Finally, there was relief in sight from a soft-spoken man known for his dignified demeanor masking a fiery passion to take down epilepsy.
Zero Tolerance for Seizures: Meeting Dr. Wilfong
“Our neurosurgeon was a good guy. He did his best, but his goal was always to reduce her seizures. That was the only goal; there was really nothing else we could look forward to,” says Dustin of the years Oliva spent under another doctor’s care.
One night, Olivia landed in the ER once again. Her doctor had retired, and it was clear she needed more intervention. Their doctor said he knew of an epileptologist who owed him a favor, and soon after, they were ushered in to meet Angus Wilfong, MD, a renowned epileptologist at Phoenix Children’s Hospital.
What struck Olivia the most when meeting Dr. Wilfong was that he looked like Dr. Martin Brenner in her favorite series, Stranger Things. What the Baileys noticed about Dr. Wilfong was his frustration. “He realized that Olivia had suffered for years without getting routed to the higher level of care she really needed. He told us with surgery, Olivia had a chance at having no seizures at all. That was his goal. Zero.”
Turns out, Dr. Wilfong himself pioneered the revolutionary ablation laser surgery that had proven to repair the regions of the brain causing seizures with exacting precision. It’s less invasive than traditional craniotomies and yields a less painful, shorter recovery time.
“We had no idea there was a higher level MRI that could accurately pinpoint the exact spots in her brain that were causing the seizures,” said Dustin, referring to the resting-state functional MRI (r-FMRI) pioneered by another top neurologist at Phoenix Children’s, Dr. Varina Boerwinkle.
Receiving care at the Level 4 (the highest) Pediatric Epilepsy Center at Phoenix Children’s Hospital was different from day one. Not only did Olivia receive world-class expertise, but at Phoenix Children’s, the needs of the whole family were thoughtfully anticipated and considered.
“Even little things, like telling us to get a bite to eat at the cafeteria,” says Dustin. “Or having the care coordinator available to me anytime to take care of little details was a lifesaver,” says Heidi. “We weren’t invisible anymore,” says Dustin. “Everyone asked about us and the rest of our family, too. It’s just a very special place.”
“It doesn’t feel like a Hospital; it just feels like family.”
A Warrior in Pajamas Wakes up to a New Life
It was in that very cafeteria that Dr. Wilfong hunted the pair down to give them a brief update on the Olivia’s surgery performed by Dr. David Adelson, Director of Barrow Neurological Institute at Phoenix Children’s.
They say Dr. Adelson is brilliant but approachable. “With him, it feels like you know a guy who happens to know brains. He’s warm and relatable, but flip a switch with clinical precision he will give you exacting details. We liked knowing that the most confident person in the operating room with our daughter was the surgeon himself.”
Watching Olivia being whisked away to surgery was a moment that still gives them pause. But she passed her post-operative milestones with ease and was sent home the next day. “That’s amazing to me. Our daughter was having brain surgery, so I was prepared for her to be in the hospital for as long as it took to recover. She was amazing,” says Heidi.
That spirit inspired the Baileys throughout their ordeal. “Her smile never stopped; she was always happy.”
After suffering recurrent seizures for years, Olivia has only had one since her surgery. “That was tough. But only for us. In her usual way of making everyone else feel better, she said, ‘Oh, honey, I’ve been dealing with these my whole life. I’ve got this,”’ Dustin reports.
The Baileys will continue to navigate medical intervention and follow-up surgeries if necessary to get to Dr. Wilfong’s original goal: zero.
“Our daughter is a warrior. And now we know anything is possible in her future. She can be anything she wants, and there are no limitations on her now,” the Baileys say, holding hands. Smiling at each other with brimming eyes.
But first, Olivia just wants to start with the things most 11-year-old girls cherish. Riding a bike around her neighborhood. Starting gymnastics class.
And swimming in her pool – all by herself.
Life with Spina Bifida only slows him down a little