Marely Chavarria Santos was born with a failing coronary heart. The tip of her liver jutted out by a gap in her stomach. A bit of her gut was so slim that vitamins couldn’t cross by.
Her coronary heart was so sick, it will definitely ballooned to the dimensions of a giant lemon, pushing onto her lungs and different organs. Her mom, Kassandra Santos, 26, recollects how Marely needed to combat for every breath, at instances dropping colour fully.
When Marely was about 3 months outdated, medical doctors put her on a listing to obtain a coronary heart transplant.
“Her time was working out,” says Grace Knowles, a pediatric nurse practitioner at Lurie Kids’s Hospital who first met Kassandra Santos when she was pregnant.
Santos grieved not only for her personal child “dying in entrance of me” but additionally for the one who would die and provides Marely a brand new coronary heart.
After simply over 100 days on the wait listing, the decision got here: A coronary heart was out there.
“The day that we obtained the decision about Marely’s coronary heart, we had been additionally deciding whether or not Marely had an opportunity of dwelling anymore,” Santos says.
Marely’s physique was shutting down rapidly, based on Dr. Kiona Allen, her Lurie heart specialist on the time. Docs sedated Marely so she may use each little bit of vitality to maintain her coronary heart going.
“Kassandra stated to me … ‘I would like you to inform the crew that, if she’s too sick, it’s OK,’ ” Knowles says. “‘They simply want to inform me in order that we will say no, and another person can have the guts.’ ”
Inside Marely’s hospital room, the mom massaged her child’s ft and performed along with her palms. Marely’s dad Jose listened to her failing coronary heart one final time with a stethoscope. Then, the mom took her flip.
“And I keep in mind crying as a result of I used to be like, ‘I carried this coronary heart for 9 months,’ ” Santos says. “We’ve been in a position to hold it alive for one more six. However will we hold it alive for one more day to get the transplant?”
Marely made it in time. Her mother calls her daughter’s new coronary heart “Marely’s miracle.”
After the hospital, Marely spent one other six months in transitional care earlier than lastly coming house in January. She’s now practically 2 years outdated. An enormous motive she is ready to dwell at house is due to Medicaid. The general public medical health insurance program for low-income and disabled individuals covers the fee for medically fragile youngsters depending on expertise. Related care in a hospital or one other facility can be far dearer.
A examine at Lurie confirmed that the fee for a bunch of youngsters on ventilators who had been delayed in returning house as a result of they couldn’t get nursing care was about $180,000, on common, per affected person whereas they waited.
Medicaid covers all the pieces from Marely’s moveable ventilator and feeding tube to a nurse skilled in managing the respiration machine. This program is offered to households who’ve personal insurance coverage, too, like Marely’s mother and father, as a result of caring for medically fragile youngsters at house is critical — Marely is eligible for no less than $30,000 a month for nursing, for instance — and personal insurance coverage usually doesn’t absolutely cowl these prices, if in any respect.
Because the Republican-controlled U.S. Senate is set to vote on drastically slashing federal spending for Medicaid to assist cowl tax cuts, households, medical doctors and nurses fear about what may occur to youngsters like Marely.
“There’s completely no manner households pays for the care that their youngsters want to permit them to remain at house,” Knowles says. “You would need to be so immensely effectively off, and sadly most of our households aren’t.”
‘Seeing her develop each single day’
Inside Kassandra Santos’ house in DeKalb, the lounge has been reworked right into a dim, heat hospital room for Marely.
A whiteboard lists her peak and weight, medicines she takes and the way usually tools preserving her alive must be modified, just like the tube connecting the opening in her neck to the ventilator respiration for her.
One current morning, Marely is sporting a pink romper and white hen slippers. She sits up in her medical crib, surrounded by toys that assist train her methods to play. She shyly hides from a customer by protecting her eyes.
She loves watching Ms. Rachel, the host of a preferred children present. It’s the place Marely has discovered to clap and smile, her mom says.
Therapists assist Marely study to crawl and get used to completely different textures, from whipped topping to beans and shredded paper. Giana Garcia is a nurse who cares for Marely, sometimes from 7 a.m. to five p.m. 4 days every week.
“I really like seeing her develop each single day and simply seeing the brand new issues that she will be able to do,” Garcia says.
Santos credit Garcia with offering “a extremely nice sense of safety and sanity,” giving her moments to deal with herself or coordinate the dizzying array of appointments for Marely. This little lady wants 24/7 supervision, and her dad works a manufacturing facility evening shift, which means Santos is each mother and nurse, usually on her personal. She skilled to supply this stage of care earlier than Marely may come house.
Allen says this little lady is flourishing.
“It’s quite common that, as soon as our children lastly get house, they actually choose up so far as their developmental progress as a result of that’s the place they’re imagined to be,” Allen says.
1 in 4 in Illinois depend on Medicaid
In Illinois, greater than 3 million individuals have Medicaid medical health insurance — about 1 in 4 individuals statewide. The wide-ranging program covers individuals from seniors in nursing houses to moms and newborns.
The variety of medically fragile youngsters like Marely is small, no less than 1,500 individuals, based on a 2024 state report. However their care and wishes are extremely costly.
For Marely, the crib designed for a hospital is sort of $7,000. Luggage to fill with vitamins that connect to Marely’s feeding tube are $450 for a 30-pack, which she goes by each month. Then, there are the hundreds of {dollars} a month for speech and bodily remedy, amongst different sorts.
Nonetheless, it’s far cheaper for medically fragile youngsters to dwell at house than in a hospital, based on the Illinois Division of Healthcare and Household Companies, which runs Medicaid. The state and federal authorities cut up the price of this system.
In 2022, Illinois Medicaid paid about $220 million for these youngsters, starting from their hospital payments to nurses of their houses — practically $145,000 per baby, on common, based on the 2024 state report. It stated the fee would have roughly doubled in the event that they had been in an establishment, resembling a hospital or a nursing facility.
Within the early Eighties, President Ronald Reagan modified Medicaid guidelines to cowl individuals with excessive medical prices at house. He was impressed by a woman named Katie Beckett, who wanted a ventilator. However Medicaid would cowl her care solely within the hospital, and her household’s personal insurance coverage had reached its restrict.
Spokespeople for 2 of the largest well being insurers in Illinois, Blue Cross and Blue Defend and UnitedHealthcare, wouldn’t touch upon what prices they cowl for medically fragile youngsters.
Santos says she fears having to navigate the crimson tape and potential denials for Marely’s life-sustaining tools if she switched to her household’s personal insurance coverage.
Susan Agrawal has firsthand expertise. Her daughter Karuna liked animals, going to highschool and swinging outdoors. She had cerebral palsy and an autoimmune illness. When she turned 3, her intestine stopped working. Her organs began shutting down. She obtained vitamins and medicines by IVs and finally was positioned on a ventilator.
Agrawal, who lives in Albany Park, says her husband had good personal insurance coverage, nevertheless it didn’t cowl nearly all of what her daughter wanted, resembling a nurse to deal with her at house or a elevate to assist her away from bed. One 12 months, she says, insurance coverage refused to pay for oxygen. Illinois Medicaid picked up the prices for full-time expert nursing, oxygen prices and different tools.
“It is a child who, years and years in the past, would have spent her whole life in an establishment and doubtless would have died fairly rapidly, however she obtained to spend her whole life at house along with her household, and this was completely due to Medicaid,” Agrawal says.
She additionally skilled to deal with her daughter, suctioning her airway and managing her ventilator.
“You don’t have any selection however to study as a result of no baby will get 24-hour nursing,” Agrawal says.
That is a part of the compounding stress for households with medically fragile youngsters. In lots of instances, one mother or father can’t work. Agrawal left her profession, in a position to do solely occasional freelance work writing about incapacity points. Santos can’t work, both.
There’s already a scarcity of nurses who can deal with their youngsters at house, analysis has proven. And, if a nurse is sick or burns out, somebody has to step in.
That makes the potential large cuts to Medicaid all of the extra annoying, Allen says.
“Lots of our households are hysterical, like, ‘What would we probably do?’ ” she says.
‘Generally, I fear they’re forgotten’
Lurie’s funding is also on the road. Greater than 50% of the hospital’s income comes from Medicaid. Allen fears the hospital may very well be restricted within the care it might present, relying on how steep the cuts to Medicaid can be.
Agrawal works for The Arc of Illinois with households who’ve youngsters with a incapacity or power situation, from bronchial asthma to autism, and youngsters like her daughter.
Karuna died in 2014 when she was 11 years outdated. Agrawal nonetheless advocates for different households who’ve medically fragile youngsters. She says that, in a personal Fb group, some mother and father have been skeptical Medicaid would actually be lower.
“We had been listening to, ‘Why are you fear-mongering? That is by no means going to occur,’ ” Agrawal says. “And I saved telling individuals, ‘I’ve lived by this.’ ”
That have was with a Democrat in control of Illinois: In 2012, Gov. Pat Quinn made enormous cuts and modifications to Medicaid, obligatory, he stated, to avoid wasting this system. These included new revenue caps for households with medically fragile youngsters. A number of mother and father launched a media marketing campaign and sued the state, which finally backed down.
Dr. Carolyn Foster researches the consequences on households of getting a medically complicated baby. As a Lurie pediatrician, she additionally takes care of them.
“Generally, I fear they’re forgotten or not recognized,” Foster says.
However she says there sometimes has been bipartisan assist for Medicaid paying to assist children dwell at house.
“I believe there’s really shared values throughout our nation of wanting households to remain collectively,” Foster says.
She factors out the financial influence and cascading impact on all households if these children wind up again within the hospital. Their mother and father might need to chop again hours at work or stop their jobs. That’s much less cash to spend on meals, gasoline and housing. And there may very well be fewer beds within the hospital for the typical child who will get sick.
Each day reminders of progress at house
Kassandra Santos has been making ready for the federal authorities to chop Medicaid since President Donald Trump took workplace once more in January.
“It’s outrageous that we’ve to take a seat right here, and it’s not simply me,” she says. “There are households throughout the nation which can be attempting to determine methods to hold their children alive with what’s already supplied. It’s simply exhausting.”
She walks into her “mini-clinic,” a bed room simply off the lounge the place she has stocked further provides Marely wants. Some had been donated by households she meets on social media who’ve children like her daughter. There are cabinets labeled with gadgets for use in case of emergency, like further syringes for Marely’s medicines and feeding tubes.
There are keepsakes from Marely’s time at Lurie — nurses coloured within the letters of her title and hung them in her hospital room. And there’s a photograph of Marely proper after she obtained her new coronary heart. In it, she’s snarled in tubes and drains.
“It’s a pleasant reminder of the likelihood that didn’t occur, and it’s a reminder of what we wish to name Marely’s miracle as a result of her coronary heart got here on the excellent time,” her mom says.
She fears what may occur if federal lawmakers determine to reduce Medicaid. Marely’s tools can final solely so lengthy, she says. She will be able to’t afford to exchange it.
“I’m going to must put her in a hospital,” Santos says. “Then, her well being’s simply going to deteriorate as a result of it’s not the place she must be.”
For now, she sees her daughter smiling, getting stronger and “dwelling her greatest life.” It’s a every day reminder of the progress she says Marely has made since she got here house.
