Shattered Dreams and Millions in Bills: Losing a Child in America

The day after her 8-month-old baby died, Kingsley Raspe opened the mail and found it had been sent to a collection for her care.

The notice included a paltry sum, $26.50 — truly absurd, given that she had previously been told she owed $2.5 million for treatment of her newborn’s congenital heart defect and other disorders..

Raspe and his wife, Maddie, endured watching doctors rip open the chest of their dagger-born daughter, Sterling, whom they called a “sweet Sterling girl.” The health team performed many other procedures. But that didn’t keep her — or her parents’ dreams — alive.

Bill lives on for them, as he does for many other families with premature and very sick infants who don’t survive.

“What a lasting tribute to the whole experience,” Kingsley fumed. “The act was absolutely heartless.”

More than 300,000 American families have infants who require advanced medical care in neonatal intensive care units each year. Some babies stay for months, quickly generating astronomical fees for highly specialized surgeries and around-the-clock care. Services are provided, and in American health care, billing follows. But for the small fraction of families whose children die, the burden can be overwhelming.

A patchwork of complicated Medicaid eligibility rules tries to foot those kinds of bills for very sick children. But policies vary from state to state, and many parents — especially those, like the Raspes, 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-authorizations that insurers often require for costly interventions. There is a need. That leaves parents in crisis — or bereaved — tasked with fighting with insurers to cover treatment.

Three families detailed to KHN how at a time when they were just trying to make ends meet, the medical bills added to their woes.

Bennett Marco

As the hospital in Reno, Nevada, was converting a parking garage into a Covid-19 unit in November 2020, Bennett Marco was born four months early. It weighed less than a pound. His care team loved to sing “Benny and the Jets” to him as a nod to the jet ventilator working his tiny lungs.

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 special care that could prevent him from going blind. The transfer team will be there in an hour. And the Nevada care team said that because it was an emergency, the family didn’t need to worry about their insurance or transportation arrangements.

Bennett’s eye problem was less severe than doctors had feared. And Krissa Marko and her husband, AJ, were billed for a plane ride from Reach Air Medical Services, which was out-of-network. Jason Sork, 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 negligence. They hadn’t applied yet because they thought they wouldn’t qualify — the family is middle-class, and Bennett was on Chrissa’s insurance. They didn’t know until a social worker at UC Davis gave them more information after the flight.

Krissa Marko 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-Surprise Act, which aims to end surprise billing, could have prevented some of the family’s headaches — but Bennett was born before it took effect that year.)

Although Chrissa was used to working toward solutions, she was mired in billing for Bennett’s care, her job, her second son, and the travel logistics of living with Bennett about 2½ hours away from her home. found himself. Krissa estimates she spends six to eight hours a week dealing with medical bills to keep them from being sent to collections.

Bennett died last July after doctors said his lungs could no longer fight. Marcos spent his bereavement leave fighting with insurers and other billing agencies.

Finally, Krissa called the air transport company REACH and said: “Look, my son died. I just want to be able to grieve, I want to focus on him. Dealing with this bill hurts. It’s a reminder every day that I don’t have to fight it.

By October, Marcos had settled the bill with Reich on the condition that he not disclose the terms. Surak 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 Krissa Marko 17 times.

“If every settlement amount were publicly disclosed, those rates would become the expectation of all patients and insurance providers,” Sorek said. “Ultimately, this would make all patients want to pay less, which would make our services unsustainable.”

Krissa Marco’s employer-provided insurance paid $6.5 million for Bennett’s care, not including what was covered by Medicaid. The Marcoses paid hospitals and doctors about $6,500. But it wasn’t the money – which the couple would have happily paid to save their son – but the endless harassment and hours spent on the phone that bothered them.

“I just wanted to be with Bennett. That’s all I wanted to do,” said Krissa Marko. “And I’ve just spent hours on those phone calls.”

Jack Shackle

Jack Shackle 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 would whisper to Jessica and her husband, Isaac, that they had a truly “lovely” 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 made it 35 days.

Weeks after her death, as the Sheckles were trying to juggle life without her in Harrisonburg, Virginia, they called the hospital’s billing department about two confusing bills. Then they were told the full cost of his care was $3.4 million.

“I laughed and then cried,” Jessica said. “He was worth every penny to us, but that’s basically $100,000 a day.”

Bills and other pre-approval notifications from out-of-network labs continue to flood their mailboxes. Finally, they figured out how to get Medicaid. Shekels paid only $470.26.

Jessica received the final bills in March, seven months after Jack’s death.

He noted that all of this comes as the University of Virginia Health System said it is scaling back its aggressive billing practices after a KHN investigation found that the university’s flagship hospital was paying off medical debt. So he is taking loans on people’s houses.

UVA Health spokesman Eric Swenson expressed his condolences to the Shakil family and added that the health system works to help patients through the “complicated process” of evaluating financial aid, including Medicaid coverage.

After KHN reached for comment, Sheckles received a call from UVA saying the hospital was refunding him.

The hospital’s care team gave the family a pamphlet on what to do during grief, but a more useful one, Jessica said, would be titled “How to Deal with Medical Bills After Your Child Dies.” ?”

Sterling Raspe

Kingsley Raspe likes to say that Sterling was “a special little lady” — not only did she have a congenital heart defect similar to Jack Shackle’s, but she was also diagnosed with Kabuki syndrome, a rare disorder that impairs growth. can be affected. Sterling also had hearing loss, spinal problems, and a compromised immune system.

An explanation of benefits from the Raspes’ commercial insurance indicated that the couple would need to pay $2.5 million for Sterling’s care — a sum too large to fit all the numbers in the column. Even Kingsley’s suspicion that the $2.5 million charge was possibly false — in large part or in whole — didn’t quell the horror he felt when he saw 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 applied for government insurance, which had to be mailed from the family home in Gary, Indiana. In doing so, he broke the strict protocols on Covid-19 exposure established early in the pandemic at the Ronald McDonald House of Charity near the Illinois hospital where Sterling was being treated and jeopardized his ability to stay there.

In denying the request, Indiana cited income limits and other technical reasons.

Everyone kept telling Kingsley and Maddie to divorce so Sterling would qualify for Medicaid. But that wasn’t an option for Kingsley, a British national who is in the US on a green card after meeting Maddie on Tinder.

Ultimately, Kingsley’s insurer revised the false notice that he owed $2.5 million. The family was told the mistake happened because Sterling’s initial hospital stay and surgeries were not pre-approved, although Kingsley said a heart defect was discovered halfway through the pregnancy, making surgery inevitable. was done

Throughout Sterling’s life, Kingsley did his programming work at his daughter’s bedside, in the hospital room. As a web developer, he created concepts that broke down Sterling’s expensive maintenance—he helped him make sense of 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 the phone calls he still has to endure from errant billers.

Despite racking up other bills in the tens of thousands, he and his wife eventually paid their $4,000 deductible, along with small charges and equipment rental fees that weren’t covered. In April, Maddie gave birth to a son, Wren, and Kingsley said he knew Sterling acted as his brother’s guardian angel.

“My daughter passed away. I’m not insecure, but I’m not in financial ruin. That can’t 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 logic is that?”

Visiting the NICU.

Contact your insurance company to discuss the costs of your NICU stay, including what is and isn’t covered. 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, called SSI. If your child qualifies, it can dramatically reduce your out-of-pocket costs for a child with large medical bills.

The March of Dimes offers a “My NICU Baby” app designed to help you get through the overwhelming experience. The nonprofit organization says the app will help you learn about caring for your baby in the NICU and at home, as well as monitor your baby’s progress, manage your health, and keep track of your to-do list and questions. Can help keep track of.

If specific insurers or bills are confusing, check with your state insurance office. All states provide consumer assistance, and some states have attorneys who can help you.

Kingsley Raspe also compiled advice for other families who have their babies stay 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. Do you have an interesting medical bill you’d like to share with us? Tell us about it!

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