Wichita girl who walked on life support at Children’s Mercy dies after returning home

A Wichita girl has died after returning home from a Kansas City hospital, where she was the first patient to ever walk on an invasive form of life support at Children’s Mercy Hospital.

Zei Uwadia’s mother announced on Facebook that her daughter died less than two weeks after returning to Wichita. Zei left Children’s Mercy on Jan. 31 — a day before her 17th birthday — after spending 457 days there.

“Zei won her battle with the universe tonight at 7:54 pm, at home, in her bed, in my arms,” Brie Kerschen said in a Facebook post early Tuesday morning.

A GoFundMe page states that funeral arrangements are pending and services likely will be next week.

Zei (pronounced “Zay”) gained national attention last year when she became the first Children’s Mercy patient to walk while on extracorporeal membrane oxygenation, or ECMO, a particularly invasive form of life support. Hundreds of thousands of people watched her walking on videos posted online by her mother, the Kansas City Star and CNN.

When Zei left Children’s Mercy, the teenager was smiling as she stood tall and walked the hospital halls one last time. Staff members lined her path, applauding and wiping away tears.

“On behalf of the countless doctors, nurses and staff who cared for Zei and were inspired daily by her fighting spirit, all of us at Children’s Mercy were heartbroken to learn of her passing,” the hospital said in a statement. “Our thoughts are with her family and friends and everyone who loved her.”

After spending 457 days at the hospital, including her 16th birthday, Zei had wanted to return home.

“This was a big goal for us, and it was a little difficult for us to achieve,” Kerschen said after Zei made it through the door of their Wichita home. “We had lots of ups and downs in the past month and it finally came to the point where we just had a frank conversation with the physicians and said it’s time, we need to touch home. And they made it happen.”

Zei was a student at Wichita North High School. About 50 of her classmates, teachers and other friends and family lined the sidewalk from her driveway to the porch that chilly Thursday afternoon when she came back from Kansas City. They sang “Happy Birthday” as she got out of the van, even though it was a day early. They held signs with messages of support.

A lot happened while Zei was at the hospital. Her first prom was at Children’s Mercy, said Megan Von Fange, one of Zei’s teachers at North High School. And she missed holidays at home, as well as the birthdays of her younger siblings, Jai, 9, and Ziah, 4.

Classmates at North High sent cards and care packages, and some students talked with her through social media and video calls. Zei was an inspiration to her classmates, Von Fange said after she returned home.

“All of the kids know that she’s battling for her life and yet she’s still being very positive ... and getting up and moving and walking and doing physical therapy when she doesn’t want to I think helps them see that little things like homework and having to go to class when you didn’t go to sleep on time aren’t that big of a deal,” Von Fange said.

Though Zei may have become an inspiration to classmates, hospital staff and other people who only knew her from those online videos, her goal was to get better. She wanted to recover from the unexplained lung failure that nearly killed her.

“I’m excited to have more freedom,” Zei had said of returning home. “I won’t be confined to this room or the hospital halls. I can go outside. I’ll feel more normal. Not completely normal, but more.”

She was an honors student, and she planned to take classes through a North High home school program. At home, she wanted her upstairs room back. She practiced going up and down stairs in physical therapy to show she could make it to her room.

But going home proved to have its own medical challenges.

As Zei walked up the steps of her front porch, her legs gave out and she fell. But her family and friends were close by and helped her up and into her home.

She needed a tracheostomy, a tube in her neck to help her breathe. She remained on oxygen. But she no longer was on ECMO, a machine that bypassed her lungs and pulled blood from her body, oxygenated it and pumped it back in.

She had been kept alive on ECMO for 190 days at the hospital. Before her, no one at Children’s Mercy had been on it longer than three months.

“Zei is surviving but not yet thriving,” Kerschen wrote on Facebook on Saturday, 10 days after her daughter returned home. “We are trying to find balance between pushing and patience and right now, really need prayer.

“Please pray Zei’s organs pull from the strength of her spirit and work together to rid her body of excess fluid, pray her heart pumps in regular rhythm and force, and pray her lungs continue to open and exchange oxygen for ease of breathing and ability to tolerate activity. We pray for comfort and clarity and healing of Zei and all children fighting so hard for home.”

Her doctors weren’t crazy about the idea of her going home. Normally, before patients are discharged, they should rely on machines for only 30 percent of the work of inhaling and exhaling. Zei was still at 40 percent.

“There’s nothing I can do about it,” Zei had said of her situation. “Just be and live as best I can and try to get off of all these machines.”

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Kansas City Star health reporter Andy Marso was part of a Pulitzer Prize-finalist team at The Star and previously won state and regional awards at the Topeka Capital-Journal and Kansas Health Institute News Service. He has written two books, including one about his near-fatal bout with meningitis.