By Maureen Gilmer, IU Health senior journalist, firstname.lastname@example.org
She has lost count of the days her daughter has been in the hospital, but Mariah Gavia-Locke is definitely counting them down until the day 5-year-old Makayla Owens comes home.
It’s been well over a year since Makayla was admitted to Riley Hospital for Children at IU Health, her young heart too weak to do its job. Born at IU Health Methodist Hospital in August 2015, she was transferred to Riley with a congenital heart defect – hypoplastic left heart syndrome – and has been in and out of the Indianapolis hospital ever since.
In August 2019, she was re-admitted to Riley as her condition worsened. It seemed her best hope was a heart transplant. Meanwhile, she spent birthdays and holidays in the Riley Heart Center, where team members grew to love her like their own.
On Oct. 8, 2020, Riley cardiothoracic surgeon Dr. Mark Turrentine transplanted a new heart into Makayla, and her recovery has slowly continued. In late November, the heart center team said goodbye to the sassy young girl with a small parade (shared virtually so others could join in) as she moved over to the inpatient rehab center, where her recovery continues.
There, she works with physical, occupational and speech therapists several times a day to regain her strength, flexibility and motor skills, while also shoring up her confidence for a life outside the hospital.
“She’s doing a lot better,” Gavia-Locke said. “We’ve had a whole bunch of ups and downs over the past year … but now she has a new heart and she has to start working to get better.”
During her time in the heart center, Makayla got a little spoiled, her mom said.
“She is used to getting her way, and she thought she could do the same over in rehab. She’s always been her little sassy self and that hasn’t changed.”
Even though she can be tough, Makayla is a happy child, Gavia-Locke said.
“She has such a great spirit. It’s good to see how she can still smile. Through all of it, she still has her personality.”
TIME TO WORK
Occupational therapist Whitney Kozlowski arrives in Makayla’s room on a Friday morning, ready to take her down to the rehab gym. But therapy actually starts before they arrive in the gym, with Makayla maneuvering her wheelchair out of the room and down the hallway, stopping here and there to wave to other patients.
Even when they arrive in the gym, their work looks more like play, and that’s the idea, Kozlowski says as she helps Makayla step out of her wheelchair and lie down on a flat scooter, which she propels with her hands and arms.
Everything they do is designed to build up Makayla’s strength – to keep her moving forward, not sliding backward.
And with that, she scoots over to a giant dollhouse, where Kozlowski encourages her to reach for the dolls and ponies she wants to take with her on a ride around the gym.
“I need help,” Makayla says.
“You gotta reach out with your arms,” Kozlowski tells her. “Stretch.”
Makayla lets out a tiny whine before following Kozlowski’s directions. Soon, she has gathered two little ponies, a tiny chair and a miniature sled to take with her on her “adventure” across the room.
It’s all a balancing act in therapy – encouraging patients to do as much as they can, while supporting them when their body or their spirits sag.
Kozlowski challenges her young patient to reach farther, pull harder and be braver throughout the session, the first of two that day.
When one of the ponies falls off the scooter, Kozlowski suggests getting a bandage to put on it. Another form of therapy. Makayla uses her fine motor skills to peel open the paper, then pinch the plastic and apply the tiny strip across the pony’s flank.
As they finish up and wheel back over to Makayla’s chair, she wraps her arms around Kozlowski, who encourages her to push her body up, then sit back in the chair.
“My feet hurt,” Makayla says. “You’re almost there,” Kozlowski replies.
Even when she is seated again, she’s not finished.
“Can you buckle your seatbelt,” Kozlowski asks, but it’s not really a question. “Click it or ticket. You can do it.”
And she does.
“MORE TO HER STORY”
Waiting in her room when she returns is mom, who has two other children at home doing e-learning with their aunt so Gavia-Locke can come to the hospital.
Makayla, who is under the care of cardiologist Dr. John Parent, hasn’t seen her older brother and sister in person since late 2019. They were able to visit before flu restrictions went into effect, but then flu season was quickly followed by the COVID-19 lockdown.
FaceTime has taken the place of hospital visits, but next week this 5-year-old is expected to head home to be reunited with her siblings. There, the Christmas tree is still up, with presents waiting for Makayla, her mom said.
She is grateful to the Riley team for the love they’ve showered on her daughter and for the extra time they’ve spent with her, sometimes even after their shifts have ended.
“They do it from their hearts, they spend extra time with Kayla. That’s their spirit, and it’s beautiful.”
It’s been a long, hard road, Gavia-Locke acknowledged, but her faith has remained strong.
“You have to hold onto hope,” she said. “The Lord didn’t make her just for her to die this way – that’s what I held onto. There’s more to her story.”
Photos by Mike Dickbernd, IU Health visual journalist, email@example.com