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Shattered dreams and bills in the millions: Losing a baby in America

Lauren Weber, Kaiser Health News on

Published in Health & Fitness

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 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 other procedures. But it couldn’t keep her — or her parents’ dreams for her — alive.

The bills lived on for them, 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 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

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©2022 Kaiser Health News. Distributed by Tribune Content Agency, LLC.

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