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Kentucky Voices on Health Care: Maggie Chism


Maggie Chism went for a routine ultrasound five months into her first pregnancy.

When the nurse called the doctor in, the Chisms knew something wasn’t right.They were told their daughter Evelyn had a congenital heart defect.

The Chisms were given several options.

They could terminate the pregnancy. Chism could carry Evelyn to term and bring her home on hospice care where medications would ease the pain her child would experience dying at home. The final option they chose: several open-heart surgeries.

Chism was an accountant for a manufacturing facility. She planned to take family medical leave and return to work. After seeing a pediatric cardiologist, Evelyn was diagnosed with hypoplastic left heart syndrome. The left side of her heart was underdeveloped.

Evelyn was born in September. Six days later, she underwent her first open heart surgery. Chism spent 49 days in the hospital with her daughter during recovery.

By December 2016, three months later, Evelyn underwent her second heart surgery. The Chisms were told the  procedure and recovery would be easier, but there was a complication.

Evelyn had developed a cold, and while a cold isn’t lethal to most children, given her condition it almost killed her.

Chism had to resign from her job. She slept 183 nights in a hospital chair while her daughter was in recovery. Her husband traveled from Kentucky to Cincinnati Children’s Hospital Medical Center to visit on the weekends when he wasn’t working.

Evelyn was previously covered under her mother’s insurance policy. Once Chism resigned from her job, the couple thought they could keep up with the COBRA insurance payments — the insurance enacted by Congress and signed into law by President Ronald Reagan in 1985 allowing employees to have health insurance after leaving their employer.

The costs were too high — around $1,500 and $1,600 per month.

Evelyn now has health care through Medicaid with a home and community-based waiver. The protections Evelyn currently has under the Affordable Care Act (ACA) secures her coverage without denial due to a pre-existing condition or denial of coverage or a procedure due to Evelyn exceeding any lifetime maximum medical costs. 

The past has been difficult and the future is uncertain.

Given her daughter’s condition and the recent changes Republicans have attempted to make to weaken and diminish the provisions of the ACA. For Chism, it’s not about politics.

“At this point, it’s not even about politics anymore,” Chism said. “For her and so many kids like her, congenital heart defects are the number one birth defect. Losing the protections of the ACA for her and kids like her would be a death sentence.

Preexisting conditions? She will always have a preexisting condition. If that’s taken away, she will never find anyone to insure her— even if she makes it to 16, 18 or 25. By three months old, her hospital expenses were a couple of million dollars. No one can afford that. There’s no cure for what she has. It’s always going to be question of ‘is today the day I lose my daughter?’”

To have lifetime caps, Chism said her daughter would have exceeded those in the first three months of her life. It’s not a Republican issue, a Democrat issue, independent or liberal or “any other label you want to put on it — it’s just basic human decency.”

“What kind of person could look a parent in the eye and tell them their child isn’t worth saving because they can’t afford to? No parent should ever have to decide if they can afford to save their child’s life,” Chism said. “And that’s what it would come down to if these protections are taken away. It’s not (a question of) is medical technology advanced enough to save my daughter’s life, but can I afford to save my daughter’s life?”

Children aren’t numbers. Children aren’t percentages or statistics. For Chism, providing a child with the health care they need shouldn’t be determined by how financially feasible it is.

“Every 15 minutes a child is born with a congenital heart defect,” Chism said. “These are real children. These are real families. We have enough to worry about without worrying about where the money’s going to come from.

“Most families are behind on their bills. They don’t know how they are going to pay their electric bill, mortgage or rent while their child’s in the hospital. Much less, ‘oh, by the way, you don’t have health care anymore because your child has a preexisting condition or met their lifetime maximum — or Medicaid funding has been drastically cut.’ Now, we have to worry about not whether they have a home to come to or not. We have to worry about if we have the money to save their lives.”