Brain surgery helps Kittanning toddler become seizure free

Breane DeComo Kotyk was waiting to hear her daughter cry for the first time.

Nothing. Not a sound.

Little Khaleesia wasn’t breathing. The umbilical cord was wrapped around her neck. She was lifeless and blue.

It took doctors at West Penn Hospital in Bloomfield 18 minutes to resuscitate her.

The date was May 24, 2018.

“They started working on her, and we were crying because we didn’t know if she was going to live,” said her mother, Breane DeComo Kotyk of Kittanning. “We wanted to hear her cry so badly. One of the doctors took a picture while they were reviving her to show us. She is our miracle baby.”

Khaleesia’s family is celebrating a new milestone, as the 2-year-old toddler this summer underwent surgery to treat unexplained seizures. DeComo Kotyk started a Facebook page asking for prayers for “Khaleesia Our Warrior Princess.”

“There is power in prayer as well as being able to have the best doctors and nurses,” she said. “We will look back on this time when she is older and remember how rough it was but that we got through it with amazing support from our families and friends. “

At birth, Khaleesia developed meconium aspiration syndrome, which happens when a newborn breathes a mixture of feces and amniotic fluid into the lungs, her mother said.

At 2 days old, she was taken by ambulance to UPMC Children’s Hospital of Pittsburgh. She was put on extracorporeal membrane oxygenation, a machine that pumps blood from the body and oxygenates it, allowing the heart and lungs to rest, and then pumps it back in.

The device saved her life, but she suffered a stroke during the six weeks she was in the neonatal intensive care unit, her mother said. She was having trouble swallowing so she needed a feeding tube. She was released six weeks later and seemed to be doing OK, until at 4 months when she would scream all day. Doctors prescribed steroids, which weren’t effective.

DeComo Kotyk and her husband, Andrew, noticed slight eye rolls from their daughter. They turned out to be seizures, which eventually increased to seven to 10 a day.

Her big brother Kash, 6, would know when his sister was having a seizure and alert the adults.

An electroencephalogram in May confirmed that Khaleesia would be a good candidate for a brain surgery called a hemispherotomy. A hemispherotomy disconnects half of a patient’s brain to treat seizures.

She had surgery June 5.

She hasn’t had any seizures, said her mother, who credits the team of doctors, nurses and therapists at UPMC Children’s Hospital of Pittsburgh as well as an amazing family who have helped them on this journey.

Courtesy of Breane DeComo Kotyk

Khaleesia Kotyk, 2, of Kittanning was born with Meconium Aspiration Syndrome and developed infantile spasms. She had brain surgery in June at UPMC Children’s Hospital of Pittsburgh and is seizure free.

Dr. Taylor Abel, surgical director of the hospital’s pediatric epilepsy surgery program, said Khaleesia’s condition caused half the brain to have seizures and over time generated more, despite medications. Abel, who has performed more than 20 of the surgeries, said there is an 80%-90% chance she will be seizure-free the rest of her life.

“If we didn’t do something, it could become more and more severe,” Abel said. “They are such a great family. Being able to help Khaleesia is the most gratifying part of my job. It’s what gets me out of bed every morning. It motivates me to keep going.”

Abel saved the hair he shaved from Khaleesia’s head before the surgery and gave it to her mother, who plans to show her daughter the locks when she is older. Her speech is delayed but she understands more each day and is walking better, her mother said.

“I always try to find hope,” DeComo Kotyk said. “When we brought her home I noticed a difference. The world was bigger and brighter for her.”

“It’s hard,” Andrew Kotyk said. “But we are blessed. It’s a great feeling to see her running and talking and smiling.”

Khaleesia, whose name was inspired by the “Games of Thrones” series, eats by mouth about 40% and 60% through the feeding tube.

“It really does take a village,” her mom said. “We want to help spread awareness and help other families going through something similar. Our daughter had a rocky start. And she has continued to throw us curveballs. We think she is doing well and then something else happens. I told her not to throw us any more curveballs.”