michael barbaro

From The New York Times, I’m Michael Barbaro. This is “The Daily.”

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michael barbaro

Today, a Times investigation into a hospital where doctors suspected that children with complex heart conditions had been dying at higher than expected rates and where even children with low-risk conditions seemed to do poorly. Secret recordings shared with my colleague Ellen Gabler reveal what was happening inside the hospital. It’s Friday, May 31.

thomas jones

Well, Skylar, when she was born — how did it go? First time I saw her, you know, I fell in love.

tasha jones

She came out. And she’d just have her hands up by her face like she was posing. She came out posing, just like, look, I’m pretty. Whatever she was going to do, she was going to be pretty doing it.

ellen gabler

And so when did you realize that she might have a health problem?

tasha jones

O.K., so she went, I think, it was around her three-month appointment at her pediatrician’s office. And I noticed, the one doctor, she said, well, her heart sounds off, like that rhythm is really off. And she said, it could be nothing, but I just wanted to just them take a look, just look more in depth.

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michael barbaro

So Ellen, how did you meet Skylar’s family?

ellen gabler

So I met Tasha and Thomas last year. I was looking into some problems I had heard at North Carolina Children’s Hospital. And I knew that their daughter was one of the kids who had had heart surgery there.

tasha jones

I went to the cardiologist’s office. And they did E.K.G.s. And when the cardiologist came out and showed us the pictures of her heart, I can remember holding her very, very close to me, because I’m just like, no, I don’t — no. And I remember calling my husband when I went and got in the car.

thomas jones

Yeah, I was at work. And she called me. She was crying. And I was like, what’s wrong? She was like, they told her Skylar had a hole in her heart. And I was like, what?

michael barbaro

So how unusual is it for a parent to hear what Skylar’s parents heard?

ellen gabler

Heart defects are actually the most common birth defect. About 40,000 kids every year in the U.S. are born with one. 10,000 of those kids have to have surgery before they turn one. Skylar’s case was a bit different.

tasha jones

From what I could understand, she would eventually have to have, like, a patch over her heart. And she should be able to function normally.

ellen gabler

What the doctors diagnosed her with was a condition that could wait till she was older. And the majority of kids with her condition have surgery and go on to live healthy lives.

tasha jones

Be able to participate in any sports or whatever she really wanted to do.

ellen gabler

So with surgery down the line, they continued with the checkups, monitoring her heart. And —

tasha jones

Fast forward in time —

ellen gabler

In the spring of 2016 —

tasha jones

I just start noticing, every time you would have her in your chest to chest, I could feel her heart beat really fast, thump, thump, thump, like back to back.

ellen gabler

Her heart was racing. She was sweating more than usual.

tasha jones

And I’m like, are you O.K. She’d go, “Mommy, I tired, I tired.”

ellen gabler

And at one of her doctor’s appointments, the cardiologist said it was probably time to have surgery soon.

thomas jones

And I asked him about the risk. We talked about the risk. And of course, with surgery, there’s always a risk, right?

tasha jones

But the way it was presented, it was more like a simple procedure.

thomas jones

It kind of sounded like it was pretty routine. The complications for this type of surgery was really low.

tasha jones

They gave us some available dates that were open. And with me, I’m just like, O.K., well, if she has to have the surgery, we want to get it fixed and get it out of the way. So we won’t put her at a risk to have a heart attack or collapse or something else happening to her. And I’m thinking she should be in good hands, because just with the reputation, they have good health care.

ellen gabler

So Tasha’s right. UNC did have a good reputation, and they still do. But a while ago, I started hearing about some really serious concerns in the pediatric heart surgery department. And what I was hearing was these cardiologists were hesitant to send their own patients to their own hospital for surgery. That’s an alarming and concerning thing. And so I wondered, what is going on there that’s making them feel like this. But all of this was happening behind the scenes inside the hospital. And Tasha and Thomas wouldn’t have known any of that when they were setting up Skylar’s surgery.

tasha jones

It was just a random date we just picked.

ellen gabler

So they set a date a little before her third birthday.

tasha jones

June 1 and the day before, we were taking her in. And I remember I had a hard time sleeping.

thomas jones

It was just me, her and Skylar. So we were just in the bed, trying to rest. She was balled up in the middle. So we were just sitting there rubbing on her.

tasha jones

I can remember asking her, “Do you know where you’re going tomorrow?” And she said, “I’m going to the hospital.” And I’m like, “Do you know what you’re going to the hospital for?” And she said, “My heart.”

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tasha jones

Well, after probably, maybe one or two hours of sleep, I think we left the house about 6 o’clock that morning. We got to UNC hospital. It took us a while to check-in, because she was just really conversing with the check-in staff, like, you’re so pretty. And she’d go, “Thank you.” And she’s like, “See my dress?” And she was waving to everybody in the hospital — in her little diva wave. When we met up with the doctor, we had changed her into the gown. And I can remember her mood just kind of changing. She was sitting on Thomas when the heart surgeon was talking to her. I think they put her in the little hospital bed. I think they were checking her vitals. But she had gotten really quiet. She wasn’t her bubbly self anymore. And then it’s like, O.K., are you ready to go. When she was walking down the hall, you could hear her yelling for her dad. She just wanted her daddy. She’s like, “I want my daddy, daddy.”

thomas jones

And I was just thinking, should I just run out of the hospital with her. I said, “Should I just take her and just say, we just had to come back another time?” I was almost at that point.

tasha jones

Yeah, I get kind of emotional with that part. But — I’m sorry. Because that was really the last time we heard her voice, her normal voice.

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thomas jones

The biggest thing I remember is we were in the waiting room. And —

tasha jones

I felt really nervous, just really anxious, because —

thomas jones

Because we were waiting for the doctors to come out.

tasha jones

No one came out and gave us any type of update.

thomas jones

And it actually took longer than they originally said.

tasha jones

I mean, it lasted all day. I remember going to the pre-op desk and asking them, like, is somebody going to come tell us something. And she said, “Someone will come out and talk to us soon.”

ellen gabler

And what happened when the surgeon came out to update you?

tasha jones

Yeah, he said, “Everything went fine. And she should be coming out any time now.”

michael barbaro

So Ellen, what happened?

ellen gabler

Well, it’s hard to know for sure, because we weren’t in the room. But I do have Skylar’s medical records. Her parents shared them with me. And I had some heart surgeons look them over to help me understand what was going on. And the first thing is, Skylar had been misdiagnosed. Tasha and Thomas were initially told that Skylar had a hole in her heart. In fact, her condition was a bit more complicated. A vessel going into the right side of her heart wasn’t fully enclosed, letting blood leak into the wrong chamber. And so that had to be fixed during the surgery. But it’s still considered pretty low risk. The mortality rate is about 2 percent.

michael barbaro

So most kids who go through this surgery come out O.K.?

ellen gabler

Yeah, they generally do. But after surgery, Skylar was wheeled into intensive care. And a few hours later —

tasha jones

She was awake. And I felt like she was in pain.

ellen gabler

She started to have some serious problems.

tasha jones

And then I kind of start regretting. Like, did we do the right thing?

ellen gabler

Over the next couple hours, that’s when things get really bad. The machines that Skylar is hooked up to start going crazy.

tasha jones

Next thing you know, people just run in her room. And I’m kind of looking around, like, what the heck is happening.

ellen gabler

Skylar goes into cardiac arrest. Doctors and nurses swarm her bed and start doing CPR. Thomas had pulled Tasha out of the room so she didn’t have to watch what was happening to their daughter. Skylar gets CPR for almost an hour. And that night, she was put on life support. So while Skylar’s in the I.C.U., one floor down, there’s another crisis brewing. A group of doctors are in a meeting. They’re sitting around this conference table. It’s almost the entire pediatric cardiology team at UNC.

archived recording 1 The goals are to — maybe of this meeting is to figure out where to go from here.

ellen gabler

And they’re really worried. They’re worried about the patients that they see coming out of surgery. Somebody at the hospital is so worried that they secretly record the meeting and later pass that recording on to me.

michael barbaro

What would make someone so worried that they would want to secretly record this meeting?

ellen gabler

Well, when you listen to these recordings, you can hear, in the doctor’s voices, they’re really struggling with what to do with their patients, these patients who need surgery. Now, just to be clear, these are cardiologists. They diagnose and treat heart problems, but they don’t do the surgeries. They refer their cases to surgeons, either at UNC or sometimes a different hospital. And some of the kids coming out of surgery at UNC, they’re not doing well. You’ve got Skylar upstairs on life support. Right before Skylar, a newborn girl died after having surgery. Two other kids with low-risk surgeries had complications. A baby boy died after a valve in his heart appeared to have been damaged during surgery. These are the kinds of problems that the cardiologists at UNC are seeing.

archived recording 2 I asked myself, would I have my children have surgery here. In the past, I’d always felt like the answer was yes for something simple. But now, when I look myself in the mirror and what’s gone on in the past month, I can’t say that. And if I can’t say it for my kids — and that should be our group discussion. If we can’t all look ourselves in the mirror and I think we’re doing the right thing, then we need to change what we’re doing.

ellen gabler

They’re especially upset about another little girl who needed a heart transplant. And when an organ became available, apparently, the chief surgeon at the time — he’s the surgeon who operated on Skylar — didn’t come in to do the transplant.

archived recording 3 As a mother of three children, oh, my god. It’s inexcusable as a physician. We all took the oath. We are supposed to do what’s right for our patients. This is what you signed up for. And who is he to play God with some kid’s life? I can’t get past this. This is beyond horrifying.

michael barbaro

So wait, a transplant suddenly becomes available, and the doctor just doesn’t come in and do it?

ellen gabler

Well, the doctors ask their boss, the chief of their division, if there’s some sort of explanation for this.

archived recording 4 Well, is there a part of the story that we just have not — archived recording 5 No — archived recording 6 Been made privvy to yet? archived recording 7 No, I don’t think so. archived recording 8 Because this is really pretty awful. archived recording 9 It is pretty awful.

ellen gabler

He didn’t really have an answer for them. And I also asked the hospital about this. And they said that they can’t share personnel information. But generally, no surgeon can be on call 365 days a year. Of course, I also asked the surgeon himself, but he declined to comment. But the doctors in this meeting are upset, because if they have patients who need transplants, they need to be assured that there’s going to be a surgeon around to do them. And not only are the doctors in this meeting worried about the chief surgeon, who did most of the operations at this time —

archived recording 10 Nobody has their head in the sand. Like, they’re not aware that the lack of cardiac intensivists and the lack of nurses and the lack of —

ellen gabler

They’re also worried about the whole system of care.

archived recording 11 The house is in total disarray. This is crazy what we’re doing. I should be as pissed as anybody, in fact, maybe more. I’ve never seen anything like it, quite frankly.

michael barbaro

You mean everything related to kids having heart surgery at UNC?

ellen gabler

Yeah. It’s really hard to pinpoint one specific thing that’s going wrong, because heart surgery is really complicated, right? Think about all the people involved. You’ve got the surgeons, the anesthesiologists, people running the heart and lung machine during the surgery. You’ve got the nurses, the doctors in intensive care, the cardiologists. So it’s a lot of people and a lot of things that need to work exactly right in order for things to go well for these kids. And the research actually shows that kids, especially with complex conditions, usually do better in hospitals that do a lot of these surgeries. So if you’re a hospital, like UNC, that’s competing with a neighboring hospital, which they are, and actually, a lot of hospitals in the country are, then it can be really hard to get enough patients so you have the volume that you need to get the best possible outcomes. So it’s hard to say exactly why a patient wouldn’t do well. What I can tell you is that some of the doctors in this meeting worried that the hospital was under resourced in terms of staffing and training and that the hospital was taking on patients it wasn’t equipped to handle. But these doctors, they didn’t have the evidence to back up their hunch. And that’s where this recording gets really interesting.

archived recording 1 Well, I think one thing we can demand from Michael, demand in the short term is transparency in terms of the outcomes, in terms of can we honestly tell the patients what the actual outcomes are. Yes —

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ellen gabler

So one of the ways that hospitals figure out how they’re doing at these surgeries is they collect all kinds of data about every single surgery, like the weight of the baby, if the baby was premature, if there were any genetic abnormalities, things like that. And they send all this data to an outside organization. And that organization makes sure all the data is accurate. And they analyze it. Then they give a report back to the hospital. And in that report is something called risk-adjusted data.

michael barbaro

And what is that, risk-adjusted data?

ellen gabler

So it’s basically trying to account for the individual risks of a particular patient. And so that way, a hospital handling the more complex patients, it’s understood that they are going to have a higher mortality rate.

michael barbaro

It kind of takes the riskiness of what’s going on here into account and makes sure that that’s part of the data?

ellen gabler

That’s right. So the other important thing to know is that it can help show if low-risk patients are dying more than they should. Almost every hospital in the country that does pediatric heart surgeries sends this data in to that organization. But only 75 percent of hospitals make this data public. The other 25 percent of hospitals in the country don’t share this data. UNC falls into that category. What’s especially strange at UNC at the time of this meeting is even these cardiologists can’t get the mortality data for their own hospital.

michael barbaro

That’s really strange sounding. How is that possible?

ellen gabler

Well I finally figured out that the hospital hadn’t been submitting data to that outside organization, because the person whose job it was to do that, they left. And the position hadn’t been filled for quite a while. And the cardiologists are aware of this, but they still feel like there should be some basic mortality data that someone is collecting, likely the chief surgeon. That’s often something that surgeons do. So they’ve been asking for some data, but they say they’re not getting what they need.

michael barbaro

So the hospital is not sending in this data. It’s not getting a report back, which means the doctors can’t share this UNC mortality data with parents, because they don’t have it.

ellen gabler

So I don’t know what they’re sharing with parents. But what I do know is that eventually, UNC was able to submit that backlogged data. And about seven months after this meeting, the doctors were able to look at some of it.

michael barbaro

And what did that data show?

ellen gabler

So I tried for over a year to get this information. And UNC denied my requests to the point that The New York Times decided to sue them.

michael barbaro

Wow.

ellen gabler

Yeah. And just recently, I finally did get UNC to release some information.

michael barbaro

And what does it show?

ellen gabler

So for a four-year period through June of 2017, UNC had a higher death rate for pediatric heart surgeries than nearly all of the other hospitals around the country that publicly report this information. Other hospitals have mortality rates as low as 1 percent or 2 percent. And so for UNC, from the data that they gave me, their mortality rate was 4.7 percent. Now, that’s just the raw number. That’s the number of kids who died out of the total number of surgeries. The information that they won’t give me, which 75 percent of hospitals already make public, is that risk-adjusted data.

michael barbaro

Why won’t they give you that information?

ellen gabler

Well, because they say it’s not risk-adjusted enough.

michael barbaro

I’m trying to understand what that means. Data that is adjusted for the risk factors of the population that they take care of, their argument is that it doesn’t do enough adjusting for that risk?

ellen gabler

That’s what they’re saying. They say that they take care of some of the sickest patients. They say they take care of a lot of low-income patients. The problem, though, is that hospitals throughout the country, including ones that publicly report this information, they also take care of really sick patients. They also take care of low-income kids.

michael barbaro

I have to say, the fact that they’re arguing this point does make you wonder if they are worried that this risk-adjusted number that they don’t want you to see might be very unflattering.

ellen gabler

So that might be the case, but that’s why I want to see this data. And the other thing they say is that it’s not fair to compare them to other hospitals because the data isn’t really statistically significant, meaning there’s no real difference between them and another hospital. But if you’re a parent, and you have a sick kid, or if you’re a cardiologist, and you have to refer that kid for surgery, this is information you should be able to get.

archived recording (dr. timothy hoffman) And it’s a nightmare right now. I mean, it really is. And we are in crisis. And everyone is aware of that.

ellen gabler

So that guy saying it’s a nightmare, that’s Dr. Tim Hoffman. He’s the chief of pediatric cardiology. And he’s the most senior person in that meeting.

michael barbaro

So the concern among the doctors has reached pretty senior levels in the cardiology department?

ellen gabler

That’s right.

archived recording (dr. timothy hoffman) We are going to be starkly different in the next two years. I don’t know if that means we’re going to be without a surgical program, with one, or not. But this is it. This is the fork in the road.

ellen gabler

So as the meeting ends —

archived recording (dr. timothy hoffman) We will do something. I will meet with Kevin. And we’ll go from there.

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ellen gabler

Dr. Hoffman says he’s going to take these issues to someone named Kevin Kelly. That’s the head of the children’s hospital at the time.

michael barbaro

So these doctors are facing an ethical dilemma here. Something seems to be going wrong within their own hospital. And it’s putting young patients at risk. And they’re wrestling with how exactly to proceed and to call it out.

ellen gabler

Yeah, and that dilemma only intensifies.

michael barbaro

We’ll be right back.

ellen gabler

So three weeks after the doctors first meet, they gather again, this time with Kevin Kelly, the head of the children’s hospital.

archived recording (kevin kelly) I’d encourage you to be open with me as you feel comfortable. If you’re not comfortable, that’s fine too.

ellen gabler

This meeting is also secretly recorded. And the tape’s a little hard to hear.

archived recording 1 I just can’t send him more patients.

ellen gabler

But it’s clear that the doctors who are there are still really upset.

archived recording 2 And I’m looking to leadership to come up with a game plan.

ellen gabler

They don’t have access to the mortality data. They’re conflicted about where they should be referring patients. And they want leadership to do something about it.

archived recording 3 Cardiologists that are talking to you in this room today are saying that we are not on track. And I would argue that we have not been on track for some time.

michael barbaro

And what is his message to these doctors?

archived recording (kevin kelly) What we’re saying is we’ve been telling ourselves for years that things were O.K. And I actually think the statistics for quite a while were O.K. We have just hit a real rocky piece of road.

ellen gabler

So he tells the doctors that they should follow their conscience when it comes to where they refer patients. But —

archived recording (kevin kelly) Reduces the volume of — I think we’ll just reduce the number of people that we have, because that’s all I can do, because all I get to do is manage money.

ellen gabler

Then he says, if they start referring to many patients elsewhere, he might have to cut the staff at UNC.

michael barbaro

Because referring patients elsewhere will cost the hospital money?

ellen gabler

That’s right. If there’s not enough money coming in, they don’t have enough money to support the department. So essentially, some doctors feel that he’s threatening their jobs. And he ends the meeting by telling the doctors to keep quiet about it all.

archived recording (kevin kelly) I suggest you make moral personal judgments about how you handle cases. And when you walk out of here, stop talking about it outside of this room.

tasha jones

O.K., so from June 1, from the surgery to cardiac arrest to intubation —

michael barbaro

And while all this is going on, how is Skylar doing?

ellen gabler

Skylar has improved enough to come off life support. But she has a damaged vocal cord, which can be a complication from surgery or going on life support. And she ends up aspirating, so getting some things into her lungs, that she shouldn’t. She ends up getting pneumonia. She aspirates again.

tasha jones

And it was like — I call it a roller coaster ride because it was just ups, downs, ups, downs. And it was more downs than ups. I remember her birthday. We were just so upset.

thomas jones

She wasn’t even up at that time. They had her down.

tasha jones

The nurses went in there and they sang “Happy Birthday” to her at 2:12 that morning.

thomas jones

They had decorated the room, kind of dressed her up a little bit.

tasha jones

They had her her pink little headband around her head in true Skylar fashion.

ellen gabler

By the end of July —

tasha jones

That morning of July 30, she was just so happy.

ellen gabler

Skylar is doing a lot better. She is alert. She’s gotten out of bed a few times. She likes to have her hair braided and nails painted by the nurses. And her parents think she’s doing pretty well.

tasha jones

We had pretty much locked in a home health nursing agency. So it was going to be set up for when we were going home.

ellen gabler

But on one of her last days in the hospital —

tasha jones

We were watching, I think it was, “Veggie Tales.” It was her favorite video.

ellen gabler

She starts to have really serious problems.

tasha jones

And I was just sitting there right beside her in the bed. And I was actually going to go down the street to one of the salons and get my hair washed and everything. And I had turned around. And she was looking at me. And blood started coming out of her mouth. And here eyes started rolling in the back of her head. And then her stats just kind of dipped.

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tasha jones

And I’m kind of like, oh, my god. I ran out and got one of the nurses. They saw the little blood spill coming out of her mouth. And I kind of got pushed out of the way. And right before they wheeled her off, I remember just kissing her and kind of loving on her and stuff before they took her back. And I was just telling her the we loved her and — I just remember we just kept locking eyes. And I remember them rolling her off and she was still looking. And from the O.R., that was our last time seeing her, when they rolled off.

michael barbaro

Ellen, does your reporting show that the hospital is responsible for Skylar’s death?

ellen gabler

So it’s hard to know. There’s always risk when you do surgery. And there are all kinds of reasons that a kid might not make it or might have complications. But Skylar was an otherwise pretty healthy kid undergoing a relatively low-risk surgery. And she ended up having all of these complications and ultimately died. That’s the reason why this data is so important, so we can find out if situations like Skylar are happening on a broader scale. And of course, I asked UNC about Skylar’s case. And they said that because they are a health institution, they’re prohibited by law, like other health institutions, from talking about private patient information. But I also asked them, if Skylar’s parents signed a release, if they could talk with me about her situation, but they declined to do so.

michael barbaro

So what has UNC said about your reporting here?

ellen gabler

They said that they did their own investigation at the time and found that the criticisms of the program were unsubstantiated and that there were never any problems affecting patient care. They did say that there was a dysfunctional group at the time and team culture issues. They say that they’ve always been making improvements to their program, and they’re continuing to do that. They hired a new chief surgeon last summer. They said it was because the one who was there was nearing retirement. They said they’ve made other leadership changes too. And they have a very strong program today. And they’re proud of it.

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ellen gabler

But in the end, they are still unwilling to release this really important data, that’s the risk-adjusted data that over 75 percent of hospitals around the country make public. That would help confirm what they’re saying. And The Times is still suing to get this. Hey, guys, can you hear me?

thomas jones

Hey.

tasha jones

Yes.

ellen gabler

Good. All right, so we’re all here.

michael barbaro

And what have Skylar’s parents said about all this?

ellen gabler

Well, I called them on the phone and told them what I found in my reporting and how the hospital responded to it and they were understandably upset.

tasha jones

Oh, I’m just at a loss for words right now, really. That’s very upsetting because we’re trusting our daughter in the hands of the experts in this area. They’re unsure of what they’re doing.

thomas jones

If they have concerns about how the surgeries been performed or the issues that they were having, there should have been an immediate stop. This really angers me because I made a decision to move forward or to hold off or not to do it at all. But because it was presented as, oh, it’ll be over in a few hours, and she should be O.K. It angers me that it could have been avoided. She’s gone.

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thomas jones

And it’s a situation where something’s got to be done. You can’t continue to do this to people and families. And at the end of the day, that’s what it’s about — be better informed to make decisions about their loved ones.

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michael barbaro

Here’s what else you need to know today.

archived recording 1 On obstruction he said he could not say there was no crime — he could not clear you. archived recording (donald trump) That means you’re innocent. That means you’re innocent. Excuse me. Then he should have said, “You’re guilty.”

michael barbaro

On Thursday, President Trump claimed that remarks by former special counsel Robert Mueller showed he was innocent, despite Mueller’s explicit statement that he could not clear the President of criminal conduct.

archived recording (donald trump) I think Mueller is a true Never Trumper. He’s somebody that dislikes Donald Trump.

michael barbaro

The President described Mueller, without evidence, as biased against him and declared that despite its interference in the 2016 election, that Russia played no role in his victory.

archived recording (donald trump) No, Russia did not help me get elected. You know who got me elected? You know who got me elected? I got me elected. Russia didn’t help me at all. Russia, if anything, I think —

michael barbaro