Consider This from NPR - The Heartbreak And Cost Of Losing A Baby In America

Episode Date: September 27, 2022

Every year, more than 300,000 U.S. families have infants who require advanced medical care in neonatal intensive care units. Specialized treatments and round-the-clock care rack up enormous bills for parents as they try to navigate their baby's care. And in the worst case scenarios, some families are left with millions of dollars in medical bills long after their child has passed. We talk to Kaiser Health News correspondent Lauren Weber about her reporting on how steep medical bills have impacted families and what resources are available for parents with infants in the NICU.We also hear from Kingsley Raspe about the bills that piled up from treatments for his daughter, Sterling, and the heartbreak of dealing with insurers after she passed away at eight months old. In participating regions, you'll also hear a local news segment to help you make sense of what's going on in your community.Email us at [e-mail] more about sponsor message choices: podcastchoices.com/adchoicesNPR Privacy Policy

Support for NPR comes from NPR member stations and Eric and Wendy Schmidt through the Schmidt Family Foundation, working toward a healthy, resilient, secure world for all. On the web at theschmidt.org. AJ and Krissa Markow knew their son Bennett was a fighter from the moment he came into the world. I knew he was feisty and we just wanted to give him a chance. Bennett was born on November 19th, 2020, four months early. He weighed less than a pound, just 15 and a half ounces. Doctors at Renown Hospital in Reno, Nevada had to resuscitate him. And that was terrifying because he was not moving, you know, didn't look like he was making it. Neither Carissa nor AJ were able to hold him yet. But doctors told them Bennett did better than expected after they rushed him off down to the neonatal intensive care unit.

Over his first few weeks, he went through one treatment after another. But through it all, his personality shone through. He had this famous like side eye, his personality shone through. He had this famous, like, side eye. Like, he was in charge. Boss B, Benny and the Jets, because he was on a jet ventilator. When Bennett was two months old, the hospital called the Markows and told them he needed to go to UC Davis Children's Hospital in Sacramento, California, for specialized care that could keep him from going blind. UC Davis was a two and a half hour drive away. And I said, okay, well, how's he, how's he being transported? Is it like a ground ambulance? Is he going by airplane, helicopter? Like, do we go with them?

But her biggest question was, would her health insurance cover the cost of transferring Bennett? The Nevada Care team assured her that she didn't need to worry about it because it was an emergency. And so she and AJ drove to UC Davis while Bennett was transported via an air ambulance. They later found out from Reach Air Medical Services that they owed $71,000, which turned out to be out of network. My heart just dropped to my toes. The bill was more than Krissa makes in a year as a social worker. That's when I started asking around. While Medicaid would have helped to cover the costs, Bennett didn't have Medicaid at the

time because the Markows assumed they wouldn't qualify and they didn't apply at first. Nobody had told them that Bennett could qualify due to his health conditions. The real kicker? His eyes never needed treatment after all of that. The bill for the air ambulance was just one of the many that the Markhous had to deal with at the same time as they were trying to manage their son's care. Krissa spent six to eight hours every week dealing with the bills in between spending as much time as possible with Bennett, not to mention traveling two and a half hours to do so and working full time. Both were saving up their parental leave for when Bennett could finally come home. But that

time never came. After eight months of all-out effort to help Bennett survive and grow, doctors told the Markows that Bennett's lungs couldn't fight anymore, and there was nothing left to do. Bennett was taken off of his ventilators. Krissa held him on her chest, and the family had a last moment together. Spent our time with him and just helped ease him, comfort him. Bennett passed away on July 25th, 2021. The Markhouse spent their bereavement leave battling insurers and other agencies when all they wanted was space to grieve. In October, they finally settled the bill with REACH on the condition that they not disclose the terms. And on top of that, they paid roughly $6,500 out of pocket to hospitals and doctors.

Krissa's employer-provided insurance paid $6.5 million for Bennett's care, not including what was covered by Medicaid. Krissa said the whole process was traumatizing. AJ said there was no compassion. They both wish there was more transparency and support for other families in their position. It was exhausting. Yeah, it was just a terrifying experience. Consider this. Every year, more than 300,000 families in the U.S. have babies who require advanced medical attention and round-the-clock care.

It takes a staggering financial and emotional toll. And in the worst-case scenarios, some families are left with millions of dollars in medical bills long after their child is passed. From NPR, I'm Juana Summers. T's and C's apply. It's Consider This from NPR. Lauren Weber is a correspondent for Kaiser Health News. She looked into the steep medical bills that pile up from treatments in the NICU and spoke with several families about the hardships they encountered. 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. She spoke to Jessica Schickel about what she faced after her son Jack was born with a rare heart defect. 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, constant calls, and so much stress over what was approved and what was not, she much rather they had given her a pamphlet about how to deal with medical bills

when your child has died. Kingsley Rasp could have benefited from such a pamphlet. His daughter, Sterling, died after eight months of intensive care. Lauren and I recently sat down with him, and I asked him to tell me about his daughter. 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 expensive forms of congenital heart disease. My wife had a great pregnancy. Sterling was born in September 2020. After her

birth, the list of ailments that she had was ever-growing. 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. 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. 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 for not being pre-approved, 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 percent so the 2.6 million dollar bill was you know quite a shock um the hospital called us telling us we owed 11 000 and that turned out to be a mistake too. We also went to 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, during the worst time of my life, yeah, we were getting bills. I'm struck by this. What was that like for you and how were you able to deal with these

mounting stacks of bills as you're trying to care for your child yeah good question uh I still don't really know myself uh a lot of it was just ignorance I just put it out of mind and then dealt with it when I knew I had to um I made sure prior to Sterling being born that I had the best health insurance I could you could afford from a company. I'm a software engineer, so I'm grateful for that access to good benefits. So I made sure I took advantage of that. We laughed, we cried. Every bill that we got, I didn't know what to do with it.

Obviously, I paid it, but I didn't know whether or not I should pay it, whether or not it was a mistake bill. It really was, whenever I opened a bill and 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 go through. I can't even imagine. Lauren, I want 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 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 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. Kingsley told me that he did get support from one of the hospital's social workers, and he and his wife consider themselves fortunate to have escaped financial ruin, thanks in part to the support of family and friends. All the families go through the same situations for years, and sometimes an entire lifetime. So it's extremely weird to feel lucky in a situation.

As we were ending our conversation, I noticed a decorative sign with Sterling's name on the wall behind Kingsley, and I asked him about it. We had it when we decorated Sterling's room when we were pregnant, prior to finding out about the half-heart, you know, the heights by a chest. Unfortunately, when she passed away, we didn't want to redecorate her room and remove her, because although she had to experience it, it was still her room. There's pictures of little birds around the house, you know, just to remind us that, you know,

they say cardinals are, you know, visiting loved ones. And whenever we see a cardinal, we like to think that Sterling is just visiting us. And as it turns out, there's a new person for Sterling to visit. 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

to 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. Kingsley Rasp sharing some good news after a long and heartbreaking journey. Our thanks also to Kaiser Health News correspondent Lauren Weber for her reporting throughout this episode. It's Consider This from NPR. I following message come from the Kauffman Foundation, providing access to opportunities that help people achieve financial stability,

upward mobility, and economic prosperity, regardless of race, gender, or geography. Kauffman.org.