Mila marks her 4th birthday, thanks to ECMO team

By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

Mila Bayles is a tiny force of nature. She talks, she twirls, she laughs, she sings, she pinches cheeks. And her sass is next-level.

Her parents know all of this, but they make no apologies because Mila is here. And that was not always a given.

Mila, who turns 4 today, nearly died of an infection earlier this year, but the collaborative care she received at Riley Hospital for Children, including lifesaving treatment via ECMO (extracorporeal membrane oxygenation), put her on the path to healing.

Riley Children's Health has once again been awarded the Platinum-Level Award for Excellence in Life Support through ELSO (Extracorporeal Life Support Organization), which recognizes programs worldwide that distinguish themselves by having processes, procedures and systems in place that promote excellence in providing extracorporeal life support to their patients.

Fewer than 50 centers in the world are recognized at this level, and Riley has achieved this distinction since 2019.

“ECMO is the highest form of life support we can give to a patient who has heart and/or lung failure … but we think they can get better,” explained pediatric surgeon Dr. Brian Gray, surgical director of the ECMO program at Riley.

ECMO is a sort of last-gasp treatment to save the lives of patients whose hearts and/or lungs need a break to heal after the body has suffered some kind of trauma. It involves taking blood out of a patient, infusing it with oxygen, and pumping it back into the body.

Mila’s health scare started with a little bruise on her left arm toward the end of last year. Within days, that bruise had turned into an angry lump, swelling her little arm to nearly twice its normal size and leading to an appointment with orthopedics at Riley first because Mila’s dad, Mark Bayles, thought she had suffered some kind of arm injury.

It was Dr. Christine Caltoum, division chief of pediatric orthopedics at Riley, who acted immediately to save the girl’s arm as sepsis set in and called in the infectious disease team, led by Dr. John Christenson, to consult.

Dr. Christenson recalls those early days in the PICU as he rounded with the PICU team.

“It was a great team effort,” he said. “I did my best to reassure the parents that Mila was in great hands. (There is) plenty of ortho and ECMO expertise at Riley. The PICU nurses were fantastic, the ECMO and respiratory therapy teams were great, too. The ICU docs were extraordinary,” he said.

“Mila had an overwhelming infection in her body that started in her arm,” Dr. Gray confirmed, “and it caused lots of little infections throughout her lungs, which caused her lungs to fail.”

She spent 48 days in the pediatric intensive care unit at Riley, including 21 days on ECMO, after all other treatments failed and her condition continued to get worse.

“Mila was on long ECMO because her lungs were so severely injured that even a ventilator couldn’t help her,” said Dr. Matthew Friedman, critical care physician and medical director for ECMO. “We’d already tried everything else we could.”

Bayles, who was a constant presence at his daughter’s side, said he appreciated the way Riley physicians and nurses involved his wife and him in the decision-making process.

“One of the best things about Riley is if you’re a parent and you’re present, they’re going to include you in a lot of decisions, and they’re going to teach you throughout the way,” he said. “You gain a trust throughout the process. For me, we were at the best place, we had the best doctors, we had the best care team. I knew that if she got on ECMO, we were probably going to have a high success rate.”

Riley’s ECMO program, which was started in 1987, counts more than 1,300 patients in its records. Mila was No. 1,307.

“The Riley ECMO team is really phenomenal,” Dr. Friedman said. “We all work in concert to make sure we deliver the best care. Every year we get better.”

What sets Riley’s program apart is the people, Dr. Gray said.

“We have a team of highly trained nurses, physicians and providers who take care of these patients. We use simulation, we have an ECMO series of lectures to teach trainees how to take care of these patients, and after every patient, we have a debrief session. We are always training so that when a patient like Mila comes in, the team is ready.”

After Mila’s lungs healed, she still had to relearn to walk and talk in Riley’s inpatient rehab unit.

And now she’s back – in a big way.

On Monday, Bayles and his wife, Nicki Nguyen, along with Mila and her sister Meadow gathered in the ECMO simulation room at Riley to share their story and their gratitude for the Riley team.

Joining them were Drs. Gray and Friedman, as well as Kristina Cast, registered nurse and ECMO clinical specialty coordinator.

As Mila squirmed on his lap, Bayles choked up several times, recalling those early days at Riley when things were so uncertain.

“The news kept getting worse, but you can’t look at it that way,” he said, adding that he continued to find confidence in the care team even as they prepared the family for possible complications during the ECMO process. Luckily, there were none.

When his daughter started rehab, Bayles said, she couldn’t walk or talk, “but you could see how much she wanted to. It was still all right there.”

He remembers when she held her head up for the first time, when she first opened her eyes, and when she grabbed his ear – one of her trademark moves. He knew she was OK.

On Feb. 28, eight weeks after she was admitted to the hospital, Mila rang the bell and pinned her butterfly to the wall in rehab, then walked with her parents to the PICU to tell the team how grateful they were.

“I am so thankful Riley Hospital is in our backyard because I don’t know if she would be here if they weren’t,” Bayles said.

As he watched Mila prance around the simulation room, Dr. Friedman couldn’t help but feel pride in the Riley ECMO team.

“This is why we do this,” he said. “Not every patient survives, and not every patient comes back in walking, talking and laughing like Mila is able to do, but these are the outcomes we hope for and strive for with all the hours we put in. To see her come back like this is the most rewarding thing I see in my job.”

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org