The day after the death of their 8-month-old, Kingsley Raspe opened the mail and found it had been sent to the archives to be taken care of.
That notice included a modest sum, $26.50—absurd indeed, as she was previously told she owed $2.5 million to treat her newborn’s congenital heart defects and other disorders.,
Raspe and his wife, Maddie, had doctors sever the chest of their pigtail daughter, Sterling, whom they called “Sweet Sterly Gurl”. The health team did many more procedures. But it could not keep him or his parents’ dreams alive.
Bill lived for them, as he does for many other families of premature and very sick infants who do not survive.
“An enduring tribute to the whole experience,” Kingsley said angrily. “The process was just so heartless.”
more than 300,000 American families There are infants who require advanced therapy in neonatal intensive care units every year. Some children live for months, quickly generating astronomical fees for highly specialized surgeries and round-the-clock care. Services are delivered, and in US health care, billing follows. but for small fraction of families For those whose children die, the burden may be too great.
a patch of complex Medicaid-eligibility rules Want to pay these kinds of bills for very sick kids. But policies vary in each state, and many parents — especially those, like Raspez, who have commercial insurance — don’t know how to apply or think they won’t qualify.
In addition, because many crises that fall on premature or very ill babies are moment-of-moment emergencies, there may not be time for the pre-approval that insurers often require for costly interventions. This leaves parents in distress – or in bereavement – with insurers fighting to cover treatment.
The three families detailed for KHN how the medical bills added to their suffering at a time when they were trying to process their loss.
The hospital in Reno, Nevada, was converting a parking garage into a COVID-19 unit in November 2020, four months before Bennett Marco entered the world. He weighed less than a pound. His care team liked the song “Benny and the Jets” for a jet ventilator to keep his tiny lungs working.
On January 20, 2021, when Bennett was 2 months old, his parents were told that he needed to go to UC Davis Children’s Hospital in Sacramento, California, for specialized care that could keep him from going blind. The transfer team will reach there in an hour. And the Nevada care team said that because it was an emergency, the family need not worry about their insurance or mode of transportation.
Bennett’s eye problem turned out to be less serious than doctors feared. And Chrisa Marko and her husband, AJ, were billed for a plane ride from Reach Air Medical Services, which went off-network. Jason Sorick, vice president of government relations for Reach’s parent company Global Medical Response, said the ride came during a “lapse” in Bennett’s Medicaid coverage.
Marko said there was no mistake. He had not applied yet because he thought he would not qualify – the family is middle class, and Bennett was on Chrisa’s insurance. They didn’t know until a social worker at UC Davis gave them more information—after the flight.
Chrisa Marko said her heart fell on her toes when she realized she was being billed more than $71,000, which is more than she would have in a year as a social worker. (The No Surprise Act, which aims to eliminate surprise billing, could have prevented some of the family headaches—but Bennett was born this year before it went into effect.)
Though Chrisa was used to working toward a solution, found herself billing difficulties when it comes to caring for Bennett, her job, her other son, and the travel logistics to be with Bennett about two and a half hours away from her home. Chrisa estimates that she spent six to eight hours a week dealing with medical bills so they couldn’t be sent to collections—which still happened.
Bennett died last July after doctors said his lungs could no longer fight. Markows spent his bereavement leave struggling with insurers and other billing agencies.
Finally, Chrisa called the air transportation company Reach and said: “Look, my son died. I just want to be able to grieve, I want to focus on that. Dealing with this bill is painful. Every day is a reminder that I shouldn’t fight this.”
By October, Markows had settled the bill with REACH on the condition that they do not disclose the terms. Sorick said the company reaches agreements based on the financial and personal situations of each patient and their family, and that the company’s patient advocates spoke to Chrisa Marko 17 times.
“If each settlement amount is publicly disclosed, those rates become what all patients and insurance providers expect,” Sorick said. “Ultimately, this will lead all patients to pay less than the cost, making our services untenable.”
Insurance paid by the employer of Chrisa Marko $6.5 million For Bennett’s care, those not covered by Medicaid were covered. Marco paid about $6,500 to hospitals and doctors on top of his access settlement. But it was not the amount—which the couple would have happily paid to save their son—but the endless harassment and hours spent on the phone haunted them.
“I just wanted to be with Bennett; that’s all I wanted to do,” Chrisa Marko said. “And I just spent hours on these phone calls.”
Jack Schickel was born with brilliant silver hair and hypoplastic left heart syndrome. Even though he was surrounded by wires and tubes, nurses at UVA Children’s Hospital whispered to Jessica and her husband, Isaac, that they had a really “cute” baby.
But his congenital disorder meant that the left side of his heart was never fully developed. every year in America, over a thousand children are born with the syndrome.
After two surgeries, Jack’s heart could not pump enough blood on its own. He did it for 35 days.
Weeks after his death, when Schickels was trying to navigate life without him in Harrisonburg, Virginia, he called the hospital billing department about two confusing bills. He was then told that the full cost of his care was $3.4 million,
“I laughed and then cried,” said Jessica. “That was worth every penny to us, but that’s basically $100,000 a day.”
Bills from out-of-network labs and other pre-approval information kept piling up on his mailbox. Eventually, he figured out how to get Medicaid. Schickel only paid $470.26.
Jessica received the final bill in March, seven months after Jack’s death.
She noted that all of this was happening when the University of Virginia Health System said it was withdrawing its aggressive billing practices following a KHN investigation, with the prestigious University Hospital placing liens on people’s homes to recover medical debt. was.
UVA Health spokesman Eric Svenson offered condolences to the Schickel family and said the health system works to help patients navigate the “complicated process” of evaluating financial aid, including Medicaid coverage.
After reaching out to KHN for comment, Schickels received a call from UVA that the hospital was refunding her payment.
The hospital’s care team had given the family a pamphlet about what to do when grieving, but Jessica said, a more helpful one, “How do you deal with medical bills after your child dies?” Had a title.
Kingsley Raspe likes to say that Sterling was “a special little lady”—not only did she have the same congenital heart defect as Jack Schickel, but she was also diagnosed with Kabuki syndrome, a rare disorder that severely affects development. could. Sterling also had hearing loss, spinal issues, and a compromised immune system.
Explanation of benefits from Raspge’s commercial insurance indicates the couple will need to pay $2.5 million For Sterling’s care—such a huge sum that didn’t fit all the columns. Even Kingsley’s suspicions that the $2.5 million charge was possibly false — in large part or in whole — didn’t erase the panic he felt when he saw the numbers.
A computer programmer who makes $90,000 a year, Kingsley had good insurance. He frantically Googled “medical bankruptcy”.
Sterling was denied Medicaid, which is available in some states to children with complicated medical problems. Kingsley filed an application for government insurance, which was to be submitted by mail from the family home in Gary, Indiana. In doing so, he broke the strict protocol on COVID exposure laid down in the early days of the pandemic. Ronald McDonald Charity House near the Illinois hospital where Sterling was being treated and jeopardized his ability to live there.
In rejecting the application, Indiana cited income limits and other technical reasons.
Everyone kept asking Kingsley and Maddie to divorce so that Sterling would be eligible for Medicaid. But that was not an option for British national Kingsley, who is in the US on a green card after meeting Maddie on Tinder.
Ultimately, Kingsley’s insurer modified the faulty notice that it owed $2.5 million. The family was told the mistake was due to Sterling’s initial hospital stay and surgery was not pre-approved, although Kingsley said the heart defect was diagnosed halfway through the pregnancy, making surgery unavoidable.
Throughout Sterling’s life, Kingsley worked programming at his daughter’s bedside, in her hospital room. As a web developer, he visualization created Which broke Sterling’s expensive care – it helped him understand it all. But he cries when he remembers those days.
He hates that Sterling’s life can be reduced to a 2-inch pile of printed medical bills and that phone calls will still have to be endured from the wrong billers.
Despite receiving tens of thousands of other bills, he and his wife eventually paid their $4,000 deductible, plus small fees and charges for equipment rentals that weren’t covered. In April, Maddie gave birth to a son, Wren, and Kingsley said he knew Sterling served as his brother’s guardian angel.
“My daughter passed away. I am not safe, but I am not in financial ruin. The same cannot be said for every family,” he said. “How lucky am I? I was imagining the worst thing to happen, and I consider myself lucky – what kind of weird, messy logic is this?”
Navigating the NICU
Contact your insurance company to talk about the cost of your NICU living, including what is and is not. If your baby isn’t already on your plan, be sure to add them.
Talk to a social worker right away about applying for the Supplemental Security Income program known as Medicaid or SSI. If your child qualifies, this can dramatically reduce your personal costs for a child with extensive medical bills.
The March of Dimes offers a “My NICU Baby” app designed to help you get through the overwhelming experience. The nonprofit says the app can help you learn how to care for your baby in the NICU and at home, as well as monitor your baby’s progress, manage your health And can keep track of your to-do list and questions.
If particular insurers or bills are confusing, contact your state insurance office. All states offer consumer assistance, and some states have dedicated attorneys who can assist you.
Kingsley Raspe too compiled advice Other families stay for their babies in the neonatal intensive care unit.
Bill of the Month is a crowdsourced investigation by KHN and NPR One who dissects and explains medical bills. Do you have an interesting medical bill you want to share with us? tell us about it!
KHN (Kaiser Health News) is a national newsroom that conducts in-depth journalism about health issues. Along with policy analysis and polling, KHN is one of three major operational programs. kff (Kaiser Family Foundation). KFF is a thriving non-profit organization that provides information on health issues to the nation.
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