ILLINOIS — A DeKalb mother is raising urgent concerns as federal lawmakers consider cutting Medicaid — a program she says is the only reason her toddler daughter is alive and able to stay at home after surviving a heart transplant.
Marely’s Fight for Life Began at Birth
Born with severe medical conditions — including a failing heart, exposed liver, and a blocked intestine — 21-month-old Marely Chavarria Santos faced overwhelming odds from the moment she entered the world. Her heart eventually grew so large it pressed against her lungs, making it difficult to breathe.
Doctors at Lurie Children’s Hospital placed Marely on a heart transplant list when she was just 3 months old. More than 100 days later, her family received the call that changed everything — a donor heart was available.
“We didn’t know if she’d survive the wait,” said her mother, Kassandra Santos. “That heart arrived at the exact moment we were ready to say goodbye.”
Medicaid Is the Backbone of Her Care
Marely’s recovery included months in transitional care before she could return home in January. Now nearly 2 years old, she relies on a ventilator, feeding tube, and full-time nursing support — all covered through Medicaid.
Without it, the Santos family says there’s no way they could afford the $30,000+ per month for home nursing, medical supplies, therapy, and equipment.
“The cost for a hospital-grade crib alone is nearly $7,000,” said Santos. “There’s no private insurance plan that comes close to covering what she needs.”
A study at Lurie Children’s showed that delays in at-home care due to insurance gaps cost up to $180,000 per child while families waited in hospitals.
Federal Cuts Could End At-Home Stability
More than 3 million Illinois residents — about 1 in 4 — rely on Medicaid. While the number of medically fragile children is small, the cost to support them is high. Illinois spent about $220 million on this population in 2022, averaging $145,000 per child.
With the U.S. Senate debating federal budget cuts to Medicaid, families like the Santoses fear devastating consequences.
“If these cuts go through, we’ll be forced to put Marely back in the hospital,” said Santos. “That’s not where she belongs, and it will only make her sicker.”
Medicaid Was Built to Help Families Like This
The Medicaid home-care rule was first enacted in the 1980s after President Reagan responded to the case of Katie Beckett, a child on a ventilator whose care wasn’t covered at home.
But even today, many families are forced to fight insurance denials or make impossible choices between work and caregiving.
Susan Agrawal of Albany Park, whose daughter Karuna died in 2014, recalls similar struggles: “Private insurance denied even oxygen. Medicaid saved her life.”
Agrawal now works with The Arc of Illinois to support families with medically fragile children and warns that proposed cuts would set families back decades.
A Daily Fight to Stay Ahead
Kassandra Santos manages a mini-clinic inside her home, stocked with donated medical supplies and emergency equipment. Nurses like Giana Garcia provide care four days a week, but Santos handles the rest alone while her husband works night shifts.
“It’s exhausting,” she said. “We’re just trying to keep her alive with what little is already provided.”
Photos of Marely’s early days post-transplant serve as painful reminders of how far she’s come — and what’s at risk if funding disappears.
“This isn’t political for us,” said Santos. “It’s survival.”
Do you believe medically fragile children in Illinois should continue receiving Medicaid-funded home care? Share your thoughts with us at ChicagoSuburbanFamily.com.
