Bennett Markow looks to his big brother, Eli (right), during a family visit at UC Davis Children’s Hospital in Sacramento. Bennett was born four months early, in November 2020.
The day after his 8-month-old baby died, Kingsley Raspe opened the mail and found he had been sent to collections for her care.
That notice from the collections agency involved a paltry sum, $26.50 — absurd really, given he’d previously been told he owed $2.5 million for treatment of his newborn’s congenital heart defect and other disorders.
Raspe and his wife, Maddie, had endured watching doctors crack open the chest of their pigtailed daughter, Sterling, whom they called “sweet Sterly gurl.” The health team performed so many procedures. But they couldn’t keep her — or her parents’ dreams for her — alive.
The bills lived on for the Raspes, as they do for many other families of premature and very sick infants who don’t survive.
“What a lasting tribute to the entire experience,” Kingsley said angrily. “The process was just so heartless.”
More than 300,000 U.S. families have infants who require advanced medical attention in the newborn intensive care units every year. Some babies stay for months, quickly generating astronomical fees for highly specialized surgeries and round-the-clock care. The services are delivered, and in U.S. health care, billing follows. But for the smaller fraction of families whose children die, the burden can be too much to bear.
A patchwork of convoluted Medicaid-qualification rules seek to defray these kinds of bills for very sick children. But policies differ in each state, and many parents — especially those, like the Raspes, who have commercial insurance — don’t know to apply or think they won’t qualify.
Also, because many crises that befall premature or very sick babies are in-the-moment emergencies, there may not be time for the preapprovals that insurers often require for expensive interventions. That leaves parents in crisis — or in mourning — tasked with fighting with insurers to have treatment covered.
Three families detailed for KHN how medical bills compounded their suffering during a time when they were just trying to process their loss.
Bennett Markow needed a $71,000 ‘out-of-network’ emergency flight
As the hospital in Reno, Nev., was converting a parking garage into a COVID-19 unit in November 2020, Bennett Markow came into the world four months early. He weighed less than a pound. His care team loved to sing “Bennie and the Jets” to him as a nod to the jet ventilator keeping his tiny lungs working.
On Jan. 20, 2021, when he was 2 months old, Bennett’s parents were told he needed to go to UC Davis Children’s Hospital in Sacramento, Calif., for specialized care that could keep him from going blind. The transfer team would be there in an hour. And the Nevada care team said that because it was an emergency, the family needn’t worry about their insurance or the method of transportation.
Bennett’s eye problem ended up being less severe than the doctors had feared. And Crissa Markow and her husband, A.J., were billed for the plane ride from REACH Air Medical Services, which turned out to be out-of-network. Jason Sorrick, vice president of government relations for REACH’s parent company, Global Medical Response, said the ride happened during a “lapse” in Bennett’s Medicaid coverage.
The Markows said there was no lapse. They hadn’t applied for Medicaid yet because they thought they wouldn’t qualify — the family is middle-class, and Bennett was on Crissa’s insurance. They did not know they should apply until a social worker at UC Davis gave them more information — after the flight.
Bennett Markow cuddles with his dad, A.J., hours before the baby died in July 2021 at UC Davis Children’s Hospital in Sacramento, Calif.
Crissa Markow said her heart dropped to her toes when she realized she was being billed more than $71,000 — that’s more than she makes in a year as a social worker. (The federal No Surprises Act, which aims to eliminate surprise billing, could have prevented some of the family’s headaches — but Bennett was born before the law went into effect this year.)
Although Crissa was used to working toward solutions, the billing quagmires she found herself in were overwhelming as she juggled her job, caring for Bennett and her other son and the travel logistics required to stay with Bennett, who was now getting care about 2½ hours away from her home. Crissa estimates she spent six to eight hours a week dealing with medical bills to keep them from being sent to collections — which still happened.
Bennett died that July after doctors said his lungs could not fight anymore. The Markows spent their bereavement leave battling with insurers and other billing agencies.
Finally, Crissa called REACH, the air transport company, 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 traumatic. It’s a reminder every day I shouldn’t have to be fighting this.”
By October, the Markows had settled the bill with REACH on the condition that they not disclose the terms. Sorrick said that the company reaches agreements based on the financial and personal situations of each patient and their family and that the company’s patient advocates had talked to Crissa Markow 17 times.