The day after his 8-month-old died, Gary-based Kingsley Raspey opened the mail and found it had been sent to groups to look after her.
That notice included a paltry sum, $26.50 — which is really ridiculous, given he was previously told he owed $2.5 million to treat his newborn’s congenital heart defect and other disorders.
Raspe and his wife, Maddie, had bothered watching the doctors open the chest of their pigtailed daughter, Sterling, whom they called “Beautiful Girl Sterley.” The health team performed many other procedures. But she couldn’t keep her – or her parents’ dreams for her – alive.
The Bills lived for them, as for many other families of premature and extremely sick children who do not survive.
“What a lasting tribute to the whole experience,” Kingsley said angrily. “The operation was heartless.”
more than 300,000 American families They have babies who need advanced medical care in the neonatal intensive care units every year. Some kids stay put for months, quickly charging astronomical fees for highly specialized surgeries and around-the-clock care. Services are delivered, and in US healthcare, bills keep track. but for The smallest part of the families whose children die, the burden can be too much.
swirled mixture Medicaid Qualification Rules Seeking to pay these kinds of bills for very sick children. But policies vary in every state, and many parents — especially those, like Raspes, who have commercial insurance — don’t know about applying or think they don’t qualify.
Also, since many crises in premature or very sick babies are currently emergencies, there may not be time for the pre-approval that insurance companies often require for costly interventions. This leaves parents in crisis — or in mourning — tasked with battling with insurance companies to cover treatment.
Three families described to KHN in detail how their medical bills compounded their suffering at a time when they were just trying to process their loss.
As the hospital in Reno, Nevada, was converting a parking garage into a covid-19 unit in November 2020, Bennett Marco came into the world four months earlier. It weighs less than a pound. His care team loved having him sing “Bennie and the Jets” as a nod to the ventilator that keeps his little lungs working.
On January 20, 2021, when Bennett was two months old, his parents were told he needed to go to UC Davis Hospital for Children in Sacramento, California, to get specialized care that could prevent him from going blind. The transportation team will be there in an hour. The Nevada care team said that because it was an emergency, there was no need to worry about family insurance or mode of transportation.
Bennett’s eye problem became less severe than doctors had feared. And Chrisa Marco and her husband, AJ, got a bill for the plane ride from REACH Air Medical Services, which turned out to be out of network. Jason Sorek, vice president of government relations at REACH’s parent company, Global Medical Response, said the trip occurred during a “interruption” in Bennett’s Medicaid coverage.
Marcuse said there was no gag. They hadn’t applied yet because they thought they wouldn’t qualify – the family was middle-class, and Bennett had to secure Kressa. They didn’t know they should until a social worker at UC Davis gave them more information—after the flight.
Chrisa Marco said her heart fell on her toes when she realized her bills are more than $71,000, more than she earns in one year as a social worker. (The No Surprises Act, which aims to eliminate surprise bills, could have prevented some of the family’s headaches—but Bennett was born before it took effect this year.)
Although Chrisa was used to working to find solutions, the billing quagmire she found herself in while dealing with Bennett’s care, her job, her other son, and the logistics of traveling to stay with Bennett about two and a half hours from her home were overwhelming. Chrisa estimates that she spent six to eight hours a week dealing with medical bills to prevent them from being sent to collections—which still happens.
Bennett died last July after doctors said his lungs could no longer fight back. Marcuse spent his bereavement leave fighting with insurance companies and other billing agencies.
Finally, Chrisa called Air carrier Rich, and said, “Look, my son is dead. I just want to be able to grieve, I want to focus on that. Dealing with this law is painful. It’s a reminder every day that I shouldn’t be fighting this.”
By October, Marcuse had settled the bill with REACH on the condition that the terms were not disclosed. Sorek said the company reached agreements based on the financial and personal situations of each patient and their family and that the company’s patient advocates spoke to Crissa Markow 17 times.
“If every settlement amount is disclosed publicly, then those rates become the expectations of all patients and insurance providers,” Sorek said. “Ultimately, this will result in all patients wanting to pay less than cost, making our services unsustainable.”
Employer-provided insurance has been paid to Crissa Markow $6.5 million For Bennett’s care, it does not include what Medicaid covers. Markows paid nearly $6,500 out of their pockets to hospitals and doctors in addition to their REACH settlement. But it wasn’t the sums – which the couple would happily pay to save their son – but the endless harassment and hours spent on the phone that haunted them.
“I just wanted to be with Bennett; that’s all I wanted to do,” said Chrisa Marco, “and I’ve spent hours on these phone calls.”
Jack Schickel was born with stunning silver hair and hypoplastic left heart syndrome. Even though it was surrounded by wires and tubes, the nurses at UVA Children’s Hospital were whispering to Jessica and her husband, Isaac, that they had a really “cute” baby.
But his congenital disorder means the left side of his heart is not fully developed. Every year in the United States, More than a thousand children They are born with the syndrome.
After two surgeries, Jack’s heart couldn’t pump enough blood on its own. He made it 35 days.
Weeks after his death, when the Shekels were trying to disrupt life without him in Harrisonburg, Virginia, they called the hospital billing department about two confusing bills. Then they were told that the full cost of his care was $3.4 million.
“I laughed and then I cried,” Jessica said. “It was worth every penny to us, but that was basically $100,000 a day.”
Invoices from out-of-network labs and other pre-approval notices continued to confuse their mailbox. In the end, they figured out how to get Medicaid. Shickels ended up paying just $470.26.
Jessica got the final bills in March, seven months after Jack’s death.
She noted that all of this was happening as the University of Virginia Health System said it was backing away from strict billing practices after KHN . investigation I found that a prestigious university hospital was placing mortgages on people’s homes to recover medical debts.
UVA Health spokesperson Eric Swensen expressed condolences to Shekel’s family, and added that the health system is working to help patients go through the “complex process” of evaluating financial assistance, including Medicaid coverage.
After KHN reached out for comment, Shickels received a call from UVA stating that the hospital had refunded their payment.
The hospital care team had given the family a booklet about what to do when grieving, but the most helpful booklet, Jessica said, was titled “How Do You Deal With Medical Bills After Your Child Dies?”
Kingsley Raspe likes to say that Sterling was a “special little lady” – not only did she suffer from the same congenital heart defect as Jack Schickel, but she was also diagnosed with Kabuki syndrome, a rare disorder that can severely affect development. Sterling also had poor hearing, spinal cord problems, and a weak immune system.
Interpretation of benefits from Raspes’ commercial insurance indicated that the couple would need to pay 2.5 million dollars In order to take care of sterling – too large amount of numbers does not fit into the column. Even Kingsley’s suspicion that the $2.5 million charge was probably wrong – in part or in whole – didn’t erase the utter panic he felt when he saw the figure.
Kingsley was a computer programmer who earned $90,000 a year, and he had decent insurance. He frantically searched Google for “medical bankruptcy”.
Sterling has been denied Medicaid, which is available to children with complex medical problems in some states. Kingsley had applied for state insurance, which had to be submitted by mail from the family home in Gary. By doing so, he has broken the strict protocols on exposure to COVID that were put in place early in the pandemic Ronald McDonald’s Charitable House Near the Illinois hospital where Sterling was being treated is threatening his ability to stay there.
In rejecting the application, Indiana cited an income limit and other technical reasons.
Everyone kept telling Kingsley and Maddie to divorce until Sterling qualified for Medicaid. But that wasn’t an option for Kingsley, a British citizen who is in the US with a green card after a physical encounter on Tinder.
In the end, Kingsley’s insurance company revised the false notice that he owed $2.5 million. The family was told the error had occurred because Sterling’s initial hospital stay and surgeries had not been previously approved, although Kingsley said the heart defect was discovered mid-pregnancy, making surgery inevitable.
Throughout Sterling’s life, Kingsley did his programming work by his daughter’s bedside, in her hospital room. As a web developer, it is create visualizations Which reduces the expensive sterling care – it helped him understand everything. But he cries when he remembers those days.
He hates that Sterling’s life can be reduced to a pile of 2-inch printed medical bills and phone calls he still has to put up with of errant bills.
Despite receiving a slew of other bills in the tens of thousands, he and his wife eventually paid the $4,000 deduction, along with some small fees and charges for renting equipment that wasn’t covered. In April, Maddie gave birth to a son, Wren, and Kingsley said he knew Sterling had been her brother’s guardian angel.
“My daughter died. I am not unscathed, but I am not in financial ruin. The same cannot be said of every family.” How lucky am I? I’ve gone through the worst imaginable, and consider myself lucky – what kind of weird, rotten logic is this? “
KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism on health issues. Bill of the month is a collective investigation by KHN And the NPR Explains and explains medical bills. Do you have an interesting medical bill you want to share with us? Tell us about it!
Contact your insurance company to talk about the costs of staying in the NICU, including what is covered and what is not. If your child isn’t already on your plan, be sure to add them.
Talk to a social worker right away about applying for Medicaid or the Supplemental Security Income program, known as SSI. If your child qualifies, this can significantly reduce the personal cost of a child with hefty medical bills.
The March of Dimes presents the “My NICU Baby” app designed to help you delve into the overwhelming experience. The nonprofit says the app can help you learn more about caring for your child in the NICU and at home, as well as monitor your child’s progress, manage your health, and keep track of your to-do list and questions.
If insurance companies or certain bills are confusing, contact the state insurance office. All states offer consumer support, and some states have dedicated advocates who can help you.
Kingsley also fails group tips For other families commuting in the NICU, she is staying for their babies.