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The heartbreak and cost of losing a baby in America

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.
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.

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.

"If every settlement amount was disclosed publicly, then those rates become the expectation of all patients and insurance providers," Sorrick said. "Ultimately, that would lead to all patients wanting to pay below-cost, making our services unsustainable."

Crissa Markow's employer-provided insurance paid $6.5 million for Bennett's care, not including what was covered by Medicaid. The Markows paid roughly $6,500 out-of-pocket to hospitals and doctors on top of their REACH settlement. But it was not those amounts — which the couple would have happily paid to save their son — but the endless harassment and the hours spent on the phone that haunt them.

"I just wanted to be with Bennett; that's all I wanted to do," Crissa Markow said. "And I just spent hours on these phone calls."

Jack Shickel lived 35 days. His medical bill was $3.4 million

Jack Shickel was born with stunning silver hair and hypoplastic left heart syndrome. Even though he was surrounded by wires and tubes, the nurses at UVA Children's Hospital would whisper to Jessica and her husband, Isaac, that they had a truly "cute" baby.

But his congenital disorder meant the left side of his heart never fully developed. Each year in the U.S., over a thousand babies are born with the syndrome.

After two surgeries, Jack's heart could not pump enough blood on its own. He made it 35 days.

Weeks after his death, when the Shickels were trying to muddle through life without him in Harrisonburg, Va., they called the hospital billing department about two confusing bills. They were then 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 from out-of-network labs and other prior approval notifications continued to overwhelm their mailbox. Eventually, they figured out how to get Medicaid. The Shickels ended up paying only $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 rolling back its aggressive billing practices — after a KHN investigation found the prestigious university hospital was putting liens on people's homes to recoup medical debt.

When KHN reached out to UVA Health for comment on the Shickel case, a spokesperson, Eric Swensen, expressed condolences to the Shickel family, and added that the health system works to help patients navigate the "complex process" of evaluating financial assistance, including Medicaid coverage.

The Shickels also got a call from UVA after that, saying that the hospital was refunding their payment.

The hospital care team had given the family a pamphlet about what to do when grieving, but a more useful one, Jessica said, would have been titled "How Do You Deal With Medical Bills After Your Child Has Died?"

Sterling Raspe's parents considered bankruptcy to pay their bills

Kingsley Raspe likes to say his daughter Sterling was "one special little lady" — not only did she have the same congenital heart defect as Jack Shickel, but she was also diagnosed with Kabuki syndrome, a rare disorder that can severely affect development. Sterling also had hearing loss, spinal cord issues and a compromised immune system.

An explanation of benefits from the Raspes' commercial insurance indicated the couple would need to pay $2.5 million for Sterling's care — an amount so large the numbers didn't all fit in the column. Even Kingsley's suspicion that the $2.5 million charge was likely erroneous — in large part or in whole — didn't erase the sheer panic he felt when he saw the number.

As a computer programmer making $90,000 a year, Kingsley had decent insurance. He frantically Googled "medical bankruptcy."

Sterling had been denied Medicaid, which is available to children with complex medical problems in some states. In rejecting the application, Indiana cited an income threshold and other technical reasons.

Everyone kept telling Kingsley and Maddie to get divorced — just so Sterling would qualify for Medicaid. But that wasn't an option for Kingsley, a British citizen who is in the U.S. on a green card tied to his marriage.

Ultimately, Kingsley's health insurer revised the faulty notice that he owed $2.5 million. The family was told the mistake had occurred because Sterling's initial hospital stay and surgeries had not been preapproved, although Kingsley said the heart defect was discovered halfway through the pregnancy, making surgery inevitable.

Throughout Sterling's eight months of life, Kingsley did his programming job remotely — usually from his daughter's bedside in her hospital room. Using his web-developer skills, he created visualizations that break down Sterling's expensive care — it helped him make sense of it all. Then, and in the months afterward, he and his wife compiled advice for other families navigating long NICU stays with their babies.

Kingsley cries when he remembers those days.

He hates that Sterling's life has been reduced to a 2-inch stack of printed-out medical bills and the still-frequent phone calls he endures from errant billers.

Despite receiving a plethora of other bills in the tens of thousands of dollars, he and his wife eventually only had to pay their $4,000 deductible, and a smattering of smaller charges and fees for equipment rentals that weren't covered. In April, Maddie gave birth to a son, Wren. Kingsley said he knows Sterling served as her brother's guardian angel.

"My daughter passed away. I'm not unscathed, but I'm not in financial ruin. The same 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, messed-up logic is that?"

KHN (Kaiser Health News) is a nonprofit, editorially independent program of the Kaiser Family Foundation that produces in-depth journalism about health issues.

Copyright 2022 Kaiser Health News. To see more, visit Kaiser Health News.

Transcript:

JUANA SUMMERS, HOST:

It's a situation no parent wants to find themselves in - a newborn so ill that the baby has to be in the neonatal intensive care unit for weeks or even months on end. Parents are left not only worrying about their child's life but also the medical bills that are piling up. Kaiser Health News correspondent Lauren Weber has been reporting on what happens to parents who are facing that kind of hardship. And Lauren joins us now. Hi, Lauren.

LAUREN WEBER: Hi, Juana. Thanks for having me.

SUMMERS: Thank you for being here. We will be hearing from one of those parents in just a moment. But I'd like to ask you, how big of a problem is this?

WEBER: You know, over 300,000 American families find themselves with a newborn in the NICU, or the neonatal intensive care unit, every year, you know, whether their baby was born prematurely or has a birth defect or some sort of other medical emergency. And their parents are left, you know, scrambling for answers, trying to track down doctors and understand what's going on but also figuring out how just to pay for it and navigate the insurance companies and coverage. And for the smaller fraction of parents whose child they don't get to take home, dealing with that can be particularly traumatic.

SUMMERS: I'd like to bring in someone who has experienced this firsthand - Kingsley Raspe, whose daughter Sterling died after eight months of extensive hospital care. And, Kingsley, I'd first just like to say how very sorry I am about the loss of your daughter.

KINGSLEY RASPE: Thank you. Yeah. Yeah, it was an extremely terrible two years of my life. And during that, I lost a child, and we received a lot of bills during that time.

SUMMERS: Can you just tell us a little bit about Sterling and what happened to you and your family?

RASPE: Yeah, sure. So my daughter - I named her Sterling. She was a beautiful little baby girl. My wife and I referred to her as our little cherub baby. During her anatomy scan, the testing revealed she had half a heart. She was diagnosed eventually with a condition called hypoplastic left heart syndrome, or HLHS. As we found out, it's one of the most extensive forms of congenital heart disease. My wife had a great pregnancy. Sterling was born in September of 2020. After her birth, the list of ailments that she had was ever growing. During her eight-month life, seven of those months were in the ICU. She needed 10 procedures. She had four major heart surgeries. She was stomach-fed. She had a stomach feeding tube. And there was really no end in sight.

SUMMERS: And while you were grappling with this diagnosis, it sounds like you were also having to deal with a lot of very costly medical bills.

RASPE: Yeah. So during her first five months in the ICU, randomly, we just received a bill for $2.6 million, apparently denying her first five months, as I mentioned, for not being preapproved, which didn't make sense as everyone knew about Sterling prior to birth. She was born in a room of 25, 30 people. I called my insurer prior. They explained to me what I would need to do. You know, you pay your deductible and your out-of-pocket maximum, and then everything is covered 100%. So a $2.6 million bill was, you know, quite a shock.

The hospital called us, telling us we owed $11,000. And that turned out to be a mistake, too. We also went collections a few times for bills that we never even received. So yeah. All in all, you know, we were able to sort out most of it. But, yeah, it really was - whenever I opened the bill and I saw my daughter's name with a dollar amount and I'm able to see, like, how much pain and suffering she's going through - yeah, it wasn't a fun thing for us to to go through.

SUMMERS: I can't even imagine. Lauren, I want to turn to you here. I understand that you have talked to a number of parents who have been in similar positions, who had insurance but still had to fight for care and coverage.

WEBER: Yeah, absolutely. You know, Jessica Shickel spoke to me. Her son Jack was actually born with the same heart condition that Sterling was born with. And he made it 35 days in the hospital. And, you know, after he passed away, the hospital care team gave Jessica a pamphlet, you know, about what to do when you're grieving. But what she said to me is after months of dealing with bills, you know, constant calls and so much stress over what was approved and what was not, she'd much rather they had given her a pamphlet about how to deal with medical bills when your child has died, you know?

And another family, the Markows - they had a son, Bennett, who was born at only a pound in the middle of COVID. And, you know, he tried really hard, but his little lungs couldn't quite do it. And, you know, after he passed away, the Markows were left on their entire bereavement leave fighting with insurers, calling over and over again to see, you know, what was covered, what was not. And what Crissa Markow - you know, Bennett's mom - said to me is that, you know, what really hurt her the most about the entire experience is that for the months that Bennett was in the hospital, she felt like she wasted so much time on the phone with insurers that she could have spent with him instead in the limited time he had on this Earth.

SUMMERS: And, Lauren, is there anything that parents could do should they find themselves in this awful position?

WEBER: Absolutely. You know, if you find yourself in the NICU, it's great to immediately call your insurer. Make sure that your newborn child is on your insurance to start with. Then you ask, you know, what's covered, what's not. Talk through what's happening, and make sure that you're clear on that to some extent. Secondly, you know, even if you have insurance, your child may qualify for Medicaid or the Supplemental Security Income Program. So speak to a hospital social worker. You know, they'll be able to guide you through that process, which could really save you a lot of heartache and a lot of headaches and a lot of money if your child does, in fact, qualify due to their health conditions.

And finally, if you find yourself with a bunch of bills after an experience like this and you're confused, it's always worth calling your state insurance office. Oftentimes, they have advocates on staff that can help walk you through or even speak to insurers for you or kind of muddle through it with you. And then finally, too, you know, being in the NICU is a very scary experience, especially for people that have no medical background. There's medical terminology whizzing all around. You know, your child - you're just hoping your child is going to make it. You know, the March of Dimes has a great app for parents that are in situations like that that can kind of decode some of the medical terminology and also walk through checklists and other things that you should have on hand while you spend time in the NICU or in the hospital with a severely ill child.

SUMMERS: Kingsley, before we end this conversation, I just want to ask how you and your family are doing now. I understand you've had some good news recently.

RASPE: Yeah. So after the wildest rides of 2020, 2021, my wife and I just needed a real quiet, boring life, or we had hoped. But we think Sterling had something - had another plan, one more surprise for us. Three months after losing Sterling, my wife found out she was pregnant. And we welcomed our little baby boy, Sterling's brother, into the world in April this year. And it's been such a joy for us. He's babbling. He's trying new foods, wiggling places, stuff that Sterling was never able to do. We definitely consider her his little guardian angel.

SUMMERS: We're really glad to hear that. Thank you so much for sharing. That was Kingsley Raspe and Lauren Weber with Kaiser Health News. Thank you to both of you.

WEBER: Thank you.

RASPE: Thank you.

SUMMERS: And this story was part of a partnership between NPR and Kaiser Health News.

(SOUNDBITE OF GAVIN LUKE'S "NIGHT WALK") Transcript provided by NPR, Copyright NPR.