Inside DeKalb mom’s fight to keep Medicaid for her baby: ‘It’s a horrendous situation’

DeKALB – Inside Kassandra Santos’ home on a Monday in DeKalb, 1-year-old daughter Marely Chavarria Santos is in the living room playing with toys to help develop fine motor skills.

It’s a task typical of lots of growing babies, but Marely’s not like many her age. In the Santos house, the living room looks more like a hospital room than a space for play.

Between all the ventilators and portable oxygen tape, to the pulse oximeter, Marely needs round-the-clock care. Diagnosed with a congenital heart defect that come with multiple underlying health issues, Marley’s life depends on equipment and other necessities set up in her home.

That life-saving equipment in the Santos’ living room? Paid for with Medicaid, mom Kassandra Santos said.

“We have been extremely fortunate,” Santos said.

Santos estimates that Medicaid covers at least $7,000 a month in expenses on Marely’s behalf. She said some of the charges that have been billed to Medicaid get pricey.

“Medicaid covers approximately 90% of things,” Santos said. “What Medicaid does not cover are essential items for her diapers, her wipes.”

Marley’s abdomen will not lay closed properly. The tip of her liver juts out from there. She also struggles with malabsorption – when her body can’t absorb nutrients from food as it should – and feeding intolerance from impacts on her gastrointestinal system.

On a recent Monday afternoon, Marely was wearing a purple onesie. She shied away as visitors looked on by covering her eyes.

A whiteboard in the room details reminders and checklists for her care team and a list of her medications.

Despite the challenges, Santos said Marely has been doing well.

“We just had a cardiac appointment on Friday, and everything came back spectacular,” Santos said. “She’s doing great. Just figuring out some of these adjustments with her meds, but otherwise as amazing as it can get.”

In April 2024, Marely had a heart transplant.

Santos said a match was found after a vigorous three-month search.

She said she’s pondered what it would be like to connect with the heart donor’s family, but hasn’t found the words to start that conversation.

‘We only deal with red tapes’

Santos said she is concerned about what may happen if Marely’s Medicaid benefits are cut.

Under the “One Big, Beautiful Bill,” which passed in both the U.S. Senate and House and was signed by President Donald Trump July 4, provisions include significant cuts to Medicaid.

The megabill will cut Medicaid spending in Illinois by an estimated 20%, or $48 billion over 10 years, Capitol News Illinois reported. As of February, Medicaid provides health care to roughly one in four Illinois residents, or about 3.4 million Illinoisans, according to the Illinois Department of Health and Human Services.

Santos said the funding cuts mean she doesn’t know if she’ll be able to continue to get Marley’s medication.

“We only deal with red tapes, and they’re going to start limiting the funds that we access,” Kassandra said. “We’re going to get questioned again. We’re going to have to sit ... trying to figure out if somebody can help us file paperwork. We might not be able to access Marely’s medication, certain pieces of equipment.”

The Santos aren’t the only ones whose lives could be upended when Medicaid cuts take effect. Under Trump’s controversial spending bill, millions of Americans are expected to lose health insurance.

Megan Cole, associate professor at Boston University School of Public Health, said there is a vast body of evidence that shows Medicaid has a positive impact on a wide range of health outcomes.

Cole, the co-director of the university’s Medicaid Policy Lab, said mortality rates for adults and children are often directly related to their access to Medicaid. She said Medicaid is also associated with improvements in intermediate health outcomes such as blood pressure control and self-reported health statuses.

“There’s lots of evidence to show that Medicaid and expansions are associated with improved access to, and use of important health services,” Cole said. “So things like prenatal care, mental health services, cancer screenings, prescription drugs, all better enabled through Medicaid.”

Cole, who recently spoke during a panel interview conducted by SciLine, said she believes children’s access to Medicaid has positive impacts that extend beyond health care.

“We also see that [Medicaid coverage] improves educational outcomes, and then these health effects are really kind of lasting into adulthood,” Cole said.

“I’ll just say beyond health, I think there’s lots of evidence that Medicaid or expanded Medicaid eligibility leads to improved economic indicators such as less medical debt, increased economic mobility, and positive economic benefits for health systems and states,” Cole said.

‘It’s about my kid and her life’

Inside her medical crib is Marely surrounded by toys.

A rotating team of therapists and nurses help assist Santos in caring for her child who depends on technology traditionally found in a hospital or health care facility.

Santos said her husband, Jose, works for Ferrara Candy Company in DeKalb. When he’s not working for the family, he’s at home also helping with Marley’s care.

“He is usually behind the scenes, that type of thing because he’s multitasking,” Santos said. “He’s getting ready to go to work. And he helps me with some laundry. He works afternoons.”

When asked if she ever gets to sleep through the night, Kassandra said yes, but with a watchful eye.

“She sleeps through the night, but I have to leave my door open or I have to sleep out here because of her,” Kassandra said, referring to the living room. “Alarms go off. I have to be ready to go and come and figure out what’s going on with her.”

It’s not all high-stakes, though. The mom said being able to witness her daughter grow is a highlight.

“I can tell that I’m rubbing off on her how she manages her own emotions,” Santos said of Marely. “She gets upset, but she recovers pretty quickly and then makes me feel proud because she gets to see that from me and how I filter things. But seeing her grow overall, it’s been really amazing.”

But the amazing moments can be punctuated by reminders of Marely’s 24/7 needs, as one moment illustrated that day at the Santos home.

At one point, Santos quickly shifted her attention with growing concern as Marely started to choke all of a sudden. The mom rushed over to the medical crib to provide aid to her daughter.

Marely was lying down as her mother tried to connect her to suction machines to catch her secretions. The roar of the machines went off as the sound of cartoons played in the background.

Typically, Marely needs to have suctions performed every two hours or as needed so that she can breathe properly, Santos said.

A short time later, Marley clapped her hands as her mother helped change her out of the purple onesie into a blue shirt dress.

When asked if turning to private health insurance could be an option, Kassandra said she doesn’t think it would move the needle.

“We already have to deal with red tapes of going through paperwork for prioritizations and things of that nature and that’s public,” Kassandra said. “What’s private not going to do?”

Cole said there’s no historical comparison to the cuts included in the megabill. She said expanding Medicaid – the opposite of what lawmakers have done – has resulted in improved access to what Cole called critical health services, improved health outcomes and reduced mortality.

“By reversing a lot of that funding, research suggests that we’re therefore going to be reversing a lot of those positive effects that we’ve seen over the last 15 years,” Cole said.

Santos likened the financial problems she’d incur if not for Medicaid to the student loan debt crisis.

“There are people that have student loan debt,” Kassandra said. “We have life debt for Marely and all of us and everything that she’ll be acquiring and whatever time span that she’s here.”

The DeKalb mom said she’s sharing her story because she wants others to see how vital the resource is for her almost 2-year-old daughter’s life.

Santos said she wants lawmakers who supported the megabill to know what she believes is a grave misdeed they’ve done – to children and to mothers of medically complex children like herself.

“It’s not about you and your wallet,” Kassandra said. “It’s about my kid and her life, my neighbor’s child and the child that’s in the hospital fighting on for life. ... I think it’s a horrendous situation. They’re wanting to scream pro-life. And now we’re in a situation where a mother [is] not able to choose for their situation and are going to be forced to carry a child who is no longer now eligible to access services, like Medicaid, to try to fight for their life.”