Maggie Chism: In the Wake of Loss, A Powerful Voice for Change

In Kentucky in 2016, Maggie Chism welcomed her daughter Evelyn into the world. From the very beginning, Evelyn faced enormous medical challenges. Diagnosed in utero with hypoplastic left heart syndrome, she underwent three open heart surgeries before her fourth birthday. During her second surgery, Maggie found herself fighting a battle on two fronts, for her daughter’s life and for her daughter’s health care coverage.

“She almost died after her second open heart surgery,” Maggie said. “And then to find out that she might lose her health care coverage as well was absolutely devastating.”

At the time, Evelyn had private insurance, but the looming repeal of the Affordable Care Act raised terrifying possibilities like the return of lifetime coverage caps and denials for preexisting conditions. Maggie knew that nothing defined a preexisting condition more than a heart defect diagnosed in the womb.

The Center for American Progress stepped in and filmed their story. “Former Vice President Kamala Harris actually tweeted it,” Maggie said. Their video became part of a national groundswell that pressured lawmakers to back off their repeal attempt. The Chism family finally had room to breathe…for a while.

On August 27, 2024, Maggie dropped Evelyn off at her ABA therapy facility. Evelyn, who was also on the autism spectrum, had been attending therapy five days a week. “She was very puffy when I dropped her off,” Maggie recalled. “But we had been told by her pediatrician that it wasn’t something to be concerned about.”

Fifteen minutes later, the school called. “They said, we’re really worried about her. It sounds like she’s struggling to breathe as well now.” Maggie didn’t hesitate. She drove Evelyn to Cincinnati Children’s Hospital. “They immediately admitted her, and that’s when they informed me that she was in heart failure.”

Doctors treated Evelyn with IV medications — Lasix, heparin, epinephrine, and milrinone. At first, the swelling subsided, and she seemed to improve. But each time they tried to transition her off IV medications, her condition worsened. The care team listed her for a heart transplant, knowing the wait for a child her size could take months.

Evelyn began struggling with nausea and vomiting. IV Zofran helped, but any attempt to wean her off led to retching and misery.

Eventually, her doctors delivered crushing news: she had maxed out all available medications. “We don’t think that she would survive a heart transplant at this point,” they told Maggie. In early November, they placed Evelyn on comfort care. She passed away on November 13.

While their sole focus should have been keeping their daughter alive, Maggie and her family fought another battle with the health care system behind the scenes. Evelyn had qualified for a Medicaid waiver in Kentucky — a home and community-based waiver that made her care possible. But before they even knew she wouldn’t survive transplant, Maggie got a call from Evelyn’s case management company. “They told me that she was going to be kicked off the waiver because she wasn’t utilizing the services while she was in the hospital.”

The waiver system made no exceptions for children hospitalized long-term. Maggie and her family faced losing Medicaid coverage just when Evelyn needed it most. “We were planning for over a year of being in the hospital,” Maggie said. “And so, to find out that she had 60 days left on her Medicaid waiver, we were in a panic.”

As her daughter’s condition declined, Maggie continued presenting publicly about their experience. She gave a talk to Cincinnati Children’s cardiology department titled The Other Side of the Bedside: Understanding and Supporting Parent Grief Through the Long Goodbye. “It was a very long goodbye,” she said. “And the last thing that I needed to be worried about was how we were going to pay to try and save her life.”

The system had failed her in its most fundamental promise, to protect those most in need. “She qualified for the Medicaid waiver because of her heart defect,” Maggie said. “But the very condition that qualified her for it ended up being the very reason that her policy was canceled. And I don’t understand that.”

Evelyn died two weeks before the state officially canceled her Medicaid coverage. Still, on November 26, just 13 days after her death, Maggie got a text reminding her that Evelyn’s insurance would be canceled on December 1, “I mean, it was 13 days since she died, I was still in the midst of trying to accept the fact that I lost my daughter. I still saw her everywhere. I still heard her running down the hallway in my house.”

Even before Evelyn’s death, Maggie had to fight every year to get her daughter’s Medicaid waiver renewed and herself approved as a paid service provider. The state denied her application despite letters from cardiologists and nonprofits attesting to her qualifications. She had to sue to win the right to care for her own child. “At the time they were only paying paid service providers $11.50 an hour,” she said. “I would not have been able to find somebody willing to earn only $11.50 an hour”

Maggie described the system as one built to fail the very people it claimed to support. “They are abusing, emotionally and financially abusing these families,” she said. “And not every family is as fortunate as mine.” Her family had options like private insurance and relatives who could help, “but not everybody is as fortunate,” she said.

Her daughter’s story, Maggie insisted, needed to be told. “She was the strongest, bravest little girl I’ve ever known,” she said. “And she fought tooth and nail until the very end.”

Now, Maggie fights for others like Evelyn. As a board member and PR director for a nonprofit supporting families of children with congenital heart defects, she works to make the system more humane. “This is something that’s always been very important to me,” she said. “But losing her gave me a renewed sense of exactly why this type of advocacy is needed in our community.”

She speaks out because families like hers face a system built on confusion, red tape, and cruelty. “I have a college degree and spent hours… what probably accumulated to years worth of research navigating the system,” she said. “And I still got confused.”

Through it all, families battle not only for their children’s lives but also for the coverage that makes survival possible. “You’re doing all of these things,” she said. “And the last thing that you need to be worried about is their health care coverage.”

Maggie doesn’t speak from a place of politics. “It’s about basic human decency,” she said. “And this is not that.”