High hospital bills continue to plague parents of dying newborns : Shots - Health News Even after their babies died, hospital bills kept coming. These parents of fragile, very sick infants faced exorbitant bills — though they had insurance. "The process was just so heartless," one says.

The heartbreak and cost of losing a baby in America

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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.

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