The day after her 8-month-old baby died, Kingsley Rasp opened the mail and found it had been sent to collections for her care.
The notice involved a small amount, $26.50 – really unreasonable, as she had previously been told she owed $2.5 million for treatment of her newborn’s congenital heart defect and other ailments..
Rasp and his wife, Maddie, endured doctors tearing open the chest of their pigtail daughter, Sterling, whom they called “sweet Starley Girl.” The health team performs many other processes. But that didn’t keep him — or his parents’ dream for him — alive.
Bills lived for them, as they do for premature and very sick babies who don’t survive.
“What a lingering tribute to the whole experience,” Kingsley said angrily. “The process was very heartless.”
More than 300,000 US families have babies who require intensive care in a neonatal intensive care unit each year. Some babies stay for months, quickly racking up astronomical fees for highly specialized surgeries and round-the-clock care. Services are delivered, and in US healthcare, billing follows But for the small fraction of families whose children die, the burden can be overwhelming.
A patchwork of complex Medicaid-eligibility rules seeks to deny such bills to very sick children. But policies differ in each state, and many parents — especially those like Rasp, who have commercial insurance — don’t know how to apply or think they won’t qualify.
Also, because many crises involving premature or very sick babies are spur-of-the-moment emergencies, there may not be time for the pre-authorization that insurers often require for costly interventions. That leaves parents in crisis — or grief — tasked with fighting insurers for treatment.
Three families detailed for KHN how medical bills added to their suffering while they were simply trying to process their loss.
While the hospital in Reno, Nevada converted a parking garage into a Covid-19 unit in November 2020, Bennett Marco came into the world four months ago. He weighed less than a pound. His care team loved to sing “Benny and the Jets” to him to support the jet ventilator working on his tiny lungs.
On January 20, 2021, when Bennett was 2 months old, his parents were told that he would need to go to UC Davis Children’s Hospital in Sacramento, California, for specialized care that could result in him going blind. The transfer team will be there within an hour. And the Nevada Care Team said since it was an emergency, the family didn’t need to worry about their insurance or transportation options.
Bennett’s eye problems turned out to be less serious than doctors had feared. And Chrissa Marko and her husband, AJ, were billed for the flight from Rich Air Medical Services, which was out of network. Jason Sorick, vice president of government relations for Reach’s parent company, Global Medical Response, said the ride occurred during a “lapse” in Bennett’s Medicaid coverage.
Marcos said there was no error. They hadn’t applied yet because they thought they wouldn’t qualify — the family was middle-class, and Bennett was on Crisser insurance. They didn’t know they should have until a UC Davis social worker gave them more information — after the flight.
Crissa Markow said her heart dropped to her toes when she realized she was being billed more than $71,000, more than she made in a year as a social worker. (The No Surprises Act, which aims to eliminate surprise billing, would have prevented some headaches for the family — but Bennett was born before it took effect this year.)
Although Chrissa was used to working toward solutions, the billing quagmire she found herself in while dealing with Bennett care, her job, her other son and the logistics of traveling to be with Bennett some 2½ hours away from her home was overwhelming. Chrissa estimates that she spent six to eight hours a week working on medical bills so they wouldn’t be sent to collections — which still happened.
Bennett died last July when doctors said his lungs could no longer fight. The Markows spent their grieving vacation fighting with insurers and other billing agencies.
Finally, Chrissa called the air transport company REACH and said: “Look, my son is dead. I just want to be able to grieve, I want to focus on that. Dealing with this bill is traumatic. It’s a reminder every day that I don’t have to fight it.”
By October, the Marcoses settled the bill with REACH on condition that the terms not be disclosed. Sorrick said the company reaches agreements based on the financial and personal circumstances of each patient and their family, and that the company’s patient advocates spoke with Chris Marko 17 times.
“If the amount of each settlement is publicly disclosed, those rates become the expectation of all patients and insurers,” Saric said. “Ultimately, this will make our services sustainable and lead to lower costs for all patients.”
Crissa Markow’s employer-provided insurance paid $6.5 million for Bennett’s care, not including what was covered by Medicaid. The Markows paid nearly $6,500 out-of-pocket to hospitals and doctors on top of their Rich settlement. But it wasn’t the amount – which the couple would have gladly paid 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 what I wanted to do,” Krisa Marko said. “And I spent hours on these phone calls.”
Jack Schickel was born with stunning silver hair and hypoplastic left heart syndrome. Although she was surrounded by wires and tubes, nurses at UVA Children’s Hospital would whisper to Jessica and her husband, Isaac, that they had a truly “beautiful” baby.
But his congenital disorder meant the left side of his heart never fully developed. Each year in the United States, more than 1,000 babies are born with the syndrome.
After two surgeries, Jack’s heart could no longer pump enough blood on its own. He did it for 35 days.
A few weeks after his death, as the Schickels were trying to juggle life without him in Harrisonburg, Virginia, they called the hospital’s billing department about two confusing bills. They were then told that the entire cost of her care was $3.4 million.
“I laughed and then cried,” Jessica said. “He was worth every penny to us, but it’s basically $100,000 a day.”
Bills and other prior authorization notices from out-of-network labs continue to flood their mailboxes Finally, they figure out how to get Medicaid. Shekels paid only $470.26.
Jessica received the final bill in March, seven months after Jack’s death.
He noted that all of this is happening as the University of Virginia Health System says it is scaling back its aggressive billing practices after a KHN investigation found that the prestigious university hospital was trading in people’s homes to recover medical debt.
UVA Health spokesman Eric Swensen expressed his condolences to the Schickel family and added that the health system works to help patients navigate the “complicated process” of evaluating financial aid, including Medicaid coverage.
After KHN reached for comment, Schickels received a call from UVA saying the hospital was refunding them.
The hospital care team gave families a pamphlet on what to do during grief, but more useful, Jessica said, would be the one titled “How Do You Cope With Medical Bills After Your Child Dies?”
Kingsley Rasp 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 can severely affect development. Sterling also had hearing loss, spinal problems and a compromised immune system.
An explanation of benefits from the Raspes’ commercial insurance indicated the couple would pay $2.5 million for Sterling’s care — an amount so large the numbers didn’t fit in the column. Even Kingsley’s suspicion that the $2.5 million charge was probably wrong — in large part or in whole — didn’t erase the sheer horror he felt at the number.
A computer programmer making $90,000 a year, Kingsley had decent insurance. He frantically Googled “medical bankruptcy.”
Sterling was denied Medicaid, which is available in some states to children with complex medical problems. Kingsley filed an application for government insurance, which had to be mailed from the family home in Gary, Indiana. In doing so, he broke strict Covid exposure protocols at the start of the pandemic at the Ronald McDonald House of Charity near the Illinois hospital where Sterling was treated and jeopardized his ability to stay there.
In denying the application, Indiana cited income thresholds and other technical reasons.
Everyone asked Kingsley and Maddie to divorce so Sterling could qualify for Medicaid. But that wasn’t an option for Kingsle, a British national in the US on a green card after meeting Maddy on Tinder.
Ultimately, Kingsley’s insurer corrected the flawed notice that he owed $2.5 million. The family was told the mistake occurred because Sterling’s initial hospital stay and surgery were not preapproved, though Kingsley said a heart defect was discovered halfway through the pregnancy, making surgery inevitable.
Throughout Sterling’s life, Kingsley worked on her programming at her daughter’s bedside, in her hospital room. As a web developer, he created visualizations that broke down Sterling’s expensive care — it helped him make sense of it all. But remembering those days makes me cry.
He hates that Sterling’s life can be reduced to a 2-inch stack of print-out medical bills and the phone calls he still has to endure from errant billers.
Despite receiving a slew of other bills in the thousands, he and his wife eventually paid their $4,000 deductible, plus small charges and fees for equipment rentals that weren’t covered. In April, Maddie gave birth to a son, Ren, and Kingsley said he knew Sterling acted as his brother’s guardian angel.
“My daughter is dead. I’m not unscathed, but I’m not at a financial loss. The same cannot be said for every family,” he said. “How lucky am I? I went through the worst thing imaginable, and I consider myself lucky – what kind of weird, messed up logic is that?”
Navigate the NICU
Contact your insurance company to discuss the cost of your NICU stay, including what is covered and what is not. If your child is not 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 dramatically reduce your personal expenses for a child with extensive medical bills.
The March of Dimes offers a “My NICU Baby” app designed to help you navigate through the overwhelming experience. The nonprofit organization says the app can help you learn about caring for your baby in the NICU and at home, as well as monitor your baby’s progress, manage your own health and keep track of your to-do lists and questions.
If the specific insurer or bill is confusing, reach out to your state insurance office. All states offer consumer support, and some states have dedicated advocates who can help you.
Kingsley Raspe has also compiled advice for other families about their babies staying in the neonatal intensive care unit.
Bill of the Month is a crowdsourced investigation by KHN and NPR that breaks down and explains medical bills. Have an interesting medical bill you want to share with us? Tell us about it!