Years of intense seizures took away Delaney O.'s memories, sense of normalcy, and even her personality. But a team of experts at UPMC Children’s Hospital of Pittsburgh helped her fight to get it all back.
“I say all the time, they not only saved my life, but they gave me a life to live,” says Delaney, 21, of McCandless Township, Pa. “I can look forward to having my own job in the future, my own house.”
It was a feat that, even a year ago, felt out of reach. “We had to face the fact that Delaney would probably live with us the rest of her life,” says Melanie, Delaney's mom.
Delaney’s epilepsy was so severe that she needed a temporal lobectomy. But having trusted experts from the UPMC Children’s neurology team by her side gave her the confidence to keep moving forward.
But the journey to taking her life back hasn't been easy.
Seizures Don’t Always Look Like Seizures
The symptoms of Delaney’s initial focal seizures weren’t entirely clear. She experienced intense déjà vu, strange or overly strong smells, and depersonalization.
“It doesn't always look like what people anticipate a seizure to look like,” says Melanie.
But in July 2022, Delaney had her first tonic-clonic seizure (also known as a grand mal seizure). She immediately saw neurology experts at UPMC Children’s, but all they knew at this point was that one seizure had occurred.
They continued to closely monitor Delaney over the next six months, during which time she gave up her driver's license as required by Pennsylvania law.
But invisible illnesses are often difficult to manage, track, and explain. “It's hard when you're trying to tell someone how it's affecting their life, and they're like, well, she looks fine,” says Melanie.
For Delaney, it was a rough and long process to a diagnosis. In April 2023, after having a second tonic-clonic seizure on a trip with her orchestra, she received an official epilepsy diagnosis.
"When I was told I had epilepsy," I was a wreck, because I'm like, no, no, no, I love flashing lights," she said. "I had no idea that epilepsy could be anything else.”
Finding an Ally
The family found an ally when they received a referral to William Welch, MD, director of Epilepsy Neurostimulation at UPMC Children’s. He recognized Delaney’s initial seizures as focal seizures.
“What Dr. Welch did different is he validated all of our concerns and all of our fears and provided hope,” Melanie says.
Delaney started trying different medications, but still experienced many seizures. Knowing they could come at any moment was scary — and with every seizure, she lost parts of herself. It was hard to do normal, everyday activities or even leave the house without worry.
Dr. Welch became a reassuring and steadfast presence for the whole family.
“There was not a single time that he said that he didn't think this was real,” says Melanie. “And he gave us hope because he just refused to give up.”
With Dr. Welch, there was always something else to try. He was patient, kind, and always in their corner.
“We were his focus every single time that I called,” says Melanie. “Because he had the confidence that something was going to work, we had the confidence that something was going to work.”
In early 2024, Dr. Welch determined that Delaney's epilepsy wasn't treatable with medication. Their next step was testing to see if responsive neurostimulation (RNS) could work.
Finding the Root of the Problem
During testing, Delaney and her family met Taylor Abel, MD, chief of Pediatric Neurosurgery and chief of Pediatric Epilepsy Surgery at UPMC Children's. He implanted electrodes to record directly from the brain using a technique called robotic stereoelectroencephalography (SEEG), which provides precise information about the origin of the seizures in the brain.
Due to the intensity of these seizures and how they affect memory, Delaney barely recalls these tests. But it proved invaluable — the SEEG revealed that the seizures were coming from both sides of the brain in the temporal lobe. This reinforced the decision to use RNS.
RNS is a device placed within the skull that monitors brain activity, detect seizures, and then delivers electrical pulses to stop or prevent seizures in response to the brain's activity.
Even though the idea of brain surgery was intimidating, it was the answer Delaney and her family had been looking for.
“It's very scary to hear that you're getting brain surgery,” Delaney says. “I was like, oh, I don't want a machine in my head … but I actually started looking at it as a superpower. And I told my little cousins, you can tell friends that your cousin's a cyborg.”
RNS changed Delaney's life, but not in the way she expected.
Another Brain Surgery
Ultimately, RNS couldn’t control Delaney's seizures. But it wasn’t for nothing — it gave doctors a year’s worth of intricate data. This special data demonstrated that although the seizures could start from either temporal lobe, almost all of the seizures originated from only one side, which could be safely removed.
Dr. Welch recommended a temporal lobectomy, which is removal of the brain’s temporal lobe. For the surgery, they teamed up with Dr. Abel again.
“Dr. Abel went in and took out exactly what he needed to take out,” says Melanie. “She literally has no deficits.”
And this time, the brain surgery gave the results Delaney and Melanie had been hoping for.
“That was probably the most life-changing moment,” says Melanie. “Because the person that went into that surgery and the person that came out were two very different people … they gave us our girl back.”
Delaney admits to being angry and tired for a long time before the surgery. “It's really hard for anyone to truly fathom how much I changed," she says. "I mean, my entire personality changed. I feel like I lost two years of my life. I am 21, but I mentally feel like I'm still 19.”
Dr. Welch explained that the seizures were constant static in Delaney’s brain. After the lobectomy, everything was quiet for the first time.
“When I woke up from this last surgery, it was like I was a phone that was on dark mode and I was switched to light mode,” says Delaney. “I think I came home and said the word goodness about 50 times. Everything was, 'Oh goodness.'”
The family will always remember Dr. Welch and Dr. Abel for helping Delaney take her life back. “Without a doubt, the two of them together, they saved her life,” says Melanie.
Delaney quickly began making the most of it, returning to school three weeks after the lobectomy.
"I made the dean's list,” she says. “All of a sudden, I could study, I could remember … all these things that were trapped just exploded, and I was so happy, so talkative, and I wanted to be part of the world.”
Looking Towards the Future
Delaney has had one more important visit with her doctors, where she received the best news yet.
“I have been six months seizure-free,” says Delaney. “I can start driving again, and I can move on with my life.”
The whole family feels elated at Delaney’s recovery — and who she's now able to become.
“If I could take her back, this is who she was when she was a little girl," says Melanie. "This easy, carefree, I can conquer the world, you know, person. Those seizures took a lot of that from her.”
Although Delaney welcomes her new outlook on life, she can't help but also think of her past self.
“If I could go back in time, I would just give myself a hug and say it's not going to be like this forever,” she says. “You're going to find a life again.”
But after going through something so difficult, Delaney believes that there's nothing she can’t do now. It's a message she hopes will help others her age facing tough health challenges.
“For other kids going through this, don't ignore what's happening to yourself — and don't give up,” she says.
She and her family also realize the importance of spreading awareness about seizures and epilepsy symptoms, so people know when to seek help.
These days, Delaney and her mom discuss what the future looks like without the threat of seizures and epilepsy holding her back. Together, they get to ask a question they never thought would come: “What’s next?”
“When you're little, and you're thinking this is what I want to be when I grow up,” says Melanie. "We can do that now."