Marely Chavarria Santos was born with a failing heart. The tip of her liver jutted out through a hole in her abdomen. A piece of her intestine was so narrow that nutrients couldn’t pass through.
Her heart was so sick, it eventually ballooned to the size of a large lemon, pushing onto her lungs and other organs. Her mother, Kassandra Santos, 26, recalls how Marely had to fight for each breath, at times losing color completely.
When Marely was about 3 months old, doctors put her on a list to receive a heart transplant.
“Her time was running out,” says Grace Knowles, a pediatric nurse practitioner at Lurie Children’s Hospital who first met Kassandra Santos when she was pregnant.
Santos grieved not just for her own baby “dying in front of me” but also for the one who would die and give Marely a new heart.
After just over 100 days on the wait list, the call came: A heart was available.
“The day that we got the call about Marely’s heart, we were also deciding whether Marely had a chance of living anymore,” Santos says.
Marely’s body was shutting down quickly, according to Dr. Kiona Allen, her Lurie cardiologist at the time. Doctors sedated Marely so she could use every bit of energy to keep her heart going.
“Kassandra said to me … ‘I need you to tell the team that, if she’s too sick, it’s OK,’ ” Knowles says. “‘They just need to tell me so that we can say no, and someone else can have the heart.’ ”
Inside Marely’s hospital room, the mother massaged her baby’s feet and played with her hands. Marely’s dad Jose listened to her failing heart one last time with a stethoscope. Then, the mother took her turn.
“And I remember crying because I was like, ‘I carried this heart for nine months,’ ” Santos says. “We’ve been able to keep it alive for another six. But will we keep it alive for another day to get the transplant?”
Marely made it in time. Her mom calls her daughter’s new heart “Marely’s miracle.”
After the hospital, Marely spent another six months in transitional care before finally coming home in January. She’s now nearly 2 years old. A big reason she is able to live at home is because of Medicaid. The public health insurance program for low-income and disabled people covers the cost for medically fragile children dependent on technology. Similar care in a hospital or another facility would be far more expensive.
A study at Lurie showed that the cost for a group of children on ventilators who were delayed in returning home because they couldn’t get nursing care was about $180,000, on average, per patient while they waited.
Medicaid covers everything from Marely’s portable ventilator and feeding tube to a nurse trained in managing the breathing machine. This program is available to families who have private insurance, too, like Marely’s parents, because caring for medically fragile children at home is significant — Marely is eligible for at least $30,000 a month for nursing, for example — and private insurance often doesn’t fully cover these costs, if at all.
As the Republican-controlled U.S. Senate is set to vote on drastically slashing federal spending for Medicaid to help cover tax cuts, families, doctors and nurses worry about what could happen to children like Marely.
“There’s absolutely no way families can pay for the care that their children need to allow them to stay at home,” Knowles says. “You would have to be so immensely well off, and unfortunately most of our families aren’t.”
‘Seeing her grow every single day’
Inside Kassandra Santos’ home in DeKalb, the living room has been transformed into a dim, warm hospital room for Marely.
A whiteboard lists her height and weight, medications she takes and how often equipment keeping her alive needs to be changed, like the tube connecting the opening in her neck to the ventilator breathing for her.
One recent morning, Marely is wearing a pink romper and white chicken slippers. She sits up in her medical crib, surrounded by toys that help teach her how to play. She shyly hides from a visitor by covering her eyes.
She loves watching Ms. Rachel, the host of a popular kids show. It’s where Marely has learned to clap and smile, her mother says.
Therapists help Marely learn to crawl and get used to different textures, from whipped topping to beans and shredded paper. Giana Garcia is a nurse who cares for Marely, typically from 7 a.m. to 5 p.m. four days a week.
“I love seeing her grow every single day and just seeing the new things that she can do,” Garcia says.
Santos credits Garcia with providing “a really great sense of security and sanity,” giving her moments to take care of herself or coordinate the dizzying array of appointments for Marely. This little girl needs 24/7 supervision, and her dad works a factory night shift, meaning Santos is both mom and nurse, often on her own. She trained to provide this level of care before Marely could come home.
Allen says this little girl is thriving.
“It’s very common that, once our kids finally get home, they really pick up as far as their developmental progress because that’s where they’re supposed to be,” Allen says.
1 in 4 in Illinois rely on Medicaid
In Illinois, more than 3 million people have Medicaid health insurance — about 1 in 4 people statewide. The wide-ranging program covers people from seniors in nursing homes to mothers and newborns.
The number of medically fragile children like Marely is small, at least 1,500 people, according to a 2024 state report. But their care and needs are incredibly expensive.
For Marely, the crib designed for a hospital is nearly $7,000. Bags to fill with nutrients that attach to Marely’s feeding tube are $450 for a 30-pack, which she goes through every month. Then, there are the thousands of dollars a month for speech and physical therapy, among other types.
Still, it’s far cheaper for medically fragile children to live at home than in a hospital, according to the Illinois Department of Healthcare and Family Services, which runs Medicaid. The state and federal government split the cost of the program.
In 2022, Illinois Medicaid paid about $220 million for these children, ranging from their hospital bills to nurses in their homes — nearly $145,000 per child, on average, according to the 2024 state report. It said the cost would have roughly doubled if they were in an institution, such as a hospital or a nursing facility.
In the early 1980s, President Ronald Reagan changed Medicaid rules to cover people with extreme medical costs at home. He was inspired by a girl named Katie Beckett, who needed a ventilator. But Medicaid would cover her care only in the hospital, and her family’s private insurance had reached its limit.
Spokespeople for two of the biggest health insurers in Illinois, Blue Cross and Blue Shield and UnitedHealthcare, would not comment on what costs they cover for medically fragile children.
Santos says she fears having to navigate the red tape and potential denials for Marely’s life-sustaining equipment if she switched to her family’s private insurance.
Susan Agrawal has firsthand experience. Her daughter Karuna loved animals, going to school and swinging outside. She had cerebral palsy and an autoimmune disease. When she turned 3, her gut stopped working. Her organs started shutting down. She received nutrients and medications through IVs and eventually was placed on a ventilator.
Agrawal, who lives in Albany Park, says her husband had good private insurance, but it didn’t cover the majority of what her daughter needed, such as a nurse to take care of her at home or a lift to help her out of bed. One year, she says, insurance refused to pay for oxygen. Illinois Medicaid picked up the costs for full-time skilled nursing, oxygen costs and other equipment.
“This is a kid who, years and years ago, would have spent her entire life in an institution and probably would have died pretty quickly, but she got to spend her entire life at home with her family, and this was entirely because of Medicaid,” Agrawal says.
She also trained to take care of her daughter, suctioning her airway and managing her ventilator.
“You have no choice but to learn because no child gets 24-hour nursing,” Agrawal says.
This is part of the compounding stress for families with medically fragile children. In many cases, one parent can’t work. Agrawal left her career, able to do only occasional freelance work writing about disability issues. Santos can’t work, either.
There’s already a shortage of nurses who can take care of their children at home, research has shown. And, if a nurse is sick or burns out, someone has to step in.
That makes the potential massive cuts to Medicaid all the more stressful, Allen says.
“Many of our families are hysterical, like, ‘What would we possibly do?’ ” she says.
‘Sometimes, I worry they’re forgotten’
Lurie’s funding also is on the line. More than 50% of the hospital’s revenue comes from Medicaid. Allen fears the hospital could be limited in the care it can provide, depending on how steep the cuts to Medicaid will be.
Agrawal works for The Arc of Illinois with families who have children with a disability or chronic condition, from asthma to autism, and kids like her daughter.
Karuna died in 2014 when she was 11 years old. Agrawal still advocates for other families who have medically fragile children. She says that, in a private Facebook group, some parents have been skeptical Medicaid would really be cut.
“We were hearing, ‘Why are you fear-mongering? This is never going to happen,’ ” Agrawal says. “And I kept telling people, ‘I’ve lived through this.’ ”
That experience was with a Democrat in charge of Illinois: In 2012, Gov. Pat Quinn made huge cuts and changes to Medicaid, necessary, he said, to save the program. These included new income caps for families with medically fragile children. Several parents launched a media campaign and sued the state, which eventually backed down.
Dr. Carolyn Foster researches the effects on families of having a medically complex child. As a Lurie pediatrician, she also takes care of them.
“Sometimes, I worry they’re forgotten or not known,” Foster says.
But she says there typically has been bipartisan support for Medicaid paying to help kids live at home.
“I think there’s actually shared values across our country of wanting families to stay together,” Foster says.
She points out the economic impact and cascading effect on all families if these kids wind up back in the hospital. Their parents might have to cut back hours at work or quit their jobs. That’s less money to spend on food, gas and housing. And there could be fewer beds in the hospital for the average kid who gets sick.
Daily reminders of progress at home
Kassandra Santos has been preparing for the federal government to cut Medicaid since President Donald Trump took office again in January.
“It’s outrageous that we have to sit here, and it’s not just me,” she says. “There are families across the country that are trying to figure out how to keep their kids alive with what is already provided. It’s just exhausting.”
She walks into her “mini-clinic,” a bedroom just off the living room where she has stocked extra supplies Marely needs. Some were donated by families she meets on social media who have kids like her daughter. There are shelves labeled with items to be used in case of emergency, like extra syringes for Marely’s medications and feeding tubes.
There are keepsakes from Marely’s time at Lurie — nurses colored in the letters of her name and hung them in her hospital room. And there’s a photo of Marely right after she received her new heart. In it, she’s tangled up in tubes and drains.
“It’s a friendly reminder of the possibility that didn’t happen, and it’s a reminder of what we like to call Marely’s miracle because her heart came at the perfect time,” her mother says.
She fears what could happen if federal lawmakers decide to scale back Medicaid. Marely’s equipment can last only so long, she says. She can’t afford to replace it.
“I’m going to have to put her in a hospital,” Santos says. “Then, her health’s just going to deteriorate because it’s not where she needs to be.”
For now, she sees her daughter smiling, getting stronger and “living her best life.” It’s a daily reminder of the progress she says Marely has made since she came home.