We talked this week with Milwaukee Journal Sentinel reporters Kathleen Gallagher and Mark Johnson about their recent project “One in a Billion,” our latest Notable Narrative. The three-day serial tells the story of Nicholas Volker, a 4-year-old boy whose baffling illness and life-threatening symptoms defied diagnosis month after month. The role of technology in trying to help him, as well as the answers it can’t yet provide, make for gripping reading. Johnson and Gallagher talked with us separately by phone about the story. Their responses have been excerpted and combined in the Q&A that follows.
Tell me how you first heard about Nicholas Volker.
Gallagher: I was talking to someone about technologies going on in Wisconsin, and this person just happened to mention that they had sequenced all the genes of a child at Children’s Hospital. I actually didn’t say anything when that little tidbit came out, because I could tell the person felt funny about saying it. So I let it go, and as soon as I got off the phone, I found Mark, and I said, “We better check into this.” Mark had done big stories involving Children’s Hospital in the past, and so he started asking them about it, and the PR people didn’t know what we were talking about.
That’s always a good sign.
Gallagher: So it took a while. I think I got the tip sometime around the holidays, and I don’t think we met the family until at least late February.
Was the family or the hospital resistant?
Gallagher: The mother actually told us just a little while ago that she had been trying to get some publicity for Nicholas and had actually pitched the story to another reporter.
At your paper?
Gallagher: At a different publication. I don’t know what she pitched. I don’t know if she pitched the gene thing, or if it was just that she had a sick kid. So I don’t want to pass judgment on the other reporter.
It sounds like you knew right away you had a big story.
Gallagher: The source said, “All the genes.” Because I cover biotech, I knew that that was something different.
Johnson: I think the tip that she had was that they had already sequenced a child’s genes and used it for a diagnosis. I think she knew that they’d found a mutation, and it was something never seen before. Any one of those things would have been fascinating. Venturing into this new area, there were a lot of firsts about it.
Having a story that’s new or different, there’s a part of it that’s very exciting, but there’s also another part. Editors always feel a little more comfortable if something like it has been published before. “Oh, we’ve seen a story like that in The New York Times, the L.A. Times, The Wall Street Journal.” You start to question it if you haven’t seen it before...
You wonder if there's a reason you haven't seen it?
Johnson: Yes, for good reasons, it makes editors fairly cautious, and questioning.
Did you have much of that kind of response to negotiate with this story?
Johnson: No. We started meeting with editors even before we knew if the family would agree to talk to us. I didn’t think about it much at the time, but now it strikes me that we were starting this before we or the doctors or the family knew how the story was going to end. That was kind of a tricky thing.
It’s so much easier to get people’s permission, to get people to go along and talk with you afterward, if there’s a good outcome. But at the beginning, anything could have happened. They could have discovered a mistake in the science. The treatment they prescribed could have turned out badly, and maybe not even because there was a mistake – maybe just because it was inherently risky. All of those things would have made it a dicey proposition for both the doctors and the family.
How did reporting work?
Gallagher: Mark and I were the primary reporters on the project. We met the family together the first time, and then we started saying we were going to divide things, but most of the time, certainly the initial three or four times with the family, we both went. And it just worked really well, especially early on. We did a lot of stuff together, because it was such a hard topic to tackle. I remember walking out of an early interview with one of the geneticists, thinking, “I’m not sure I know what that guy was talking about.” It was such a complicated topic.
We found that we had a good rhythm doing interviews together. You had to ask a question, and when they answered, you really had to think about it. It helped to have two people asking the questions. We’d go in with prepared questions. I knew what a genome was, but I didn’t understand a lot about how you would sequence DNA. I had a vague recollection of Mendelian genetics, but this was a lot more complicated than just knowing that your brown eyes come from your mother.
Johnson: We had done some stories together during the previous year on swine flu. It wasn’t my beat, but another reporter who had been covering that was heavily into our paper’s BPA investigation, and that became a full-time job. So I ended up picking up swine flu. Kathleen covers biosciences, and she knew a lot about vaccine makers, so we collaborated on a couple of stories to do with that.
We had maybe one or two things that we disagreed on early on, but essentially, we both trusted each other.
Gallagher: I learned a lot from Mark. When we were writing Day One, he just kept piling information into the story. I was pretty freaked out at first: “We have so much we’re putting in. We’ve got to make sense of this.” But we just kept piling it in, and then just whittling and whittling and whittling. I wouldn’t have put that much in without whittling along the way.
He has a way of making sure that each section in a story is a story in and of itself, with a beginning and an end. That was immensely helpful. Still, everybody in the newsroom was betting we were going to have a fight – that it would be because of me. They think I have a volatile personality, but we never had one fight.
[To Johnson] Did you know that there was a newsroom bet that you two would fight?
Johnson: When Kathleen said she had a bet with somebody in the business section, I thought it might have been half because of me. I’ve worked in teams and done stuff by myself. I always feel like if it’s a longer story, I need to forewarn people, “I get really hyper later on. I might do stuff that drives you nuts. I’ll try to keep it in check.”
One of my other characteristics is that I’m not neat. My desk is a disaster. During the time we were actually doing the writing or going through interview transcripts, Kathleen would sit at my desk. In between sections of doing something, she’d just start straightening. I’m used to living with my mess, but other people aren’t.
Gallagher: One thing that worked really well was an idea we got from one of the other reporters here. John Diedrich has done a lot of projects – really neat projects, a lot of them having to do with crime and the criminal justice system. He observed from sitting in court so much that a lot of lawyers organize themselves with binders. So he uses binders to organize his projects. Mark and I learned that he was doing this, and so we decided to do it, too. All the transcribed interviews with doctors went in one binder, and then all our transcribed interviews with the family went into another, and all the academic papers we read went into another, and so on.
There were two really great things about that: One was that as we edited the story, when the editors were asking questions, we could find anything in a minute. The other great thing was when it came to putting together the video and looking for quotes to embed in the story, we could just go to those binders, and we had all the transcripts there.
So the project wasn’t dependent on the person who did the interview digging through something to get it to other people.
Gallagher: If we both got hit by a beer truck, they would have found everything in the binders. Everyone on the project knew how we were doing it, so they could go read things themselves.
Did you learn anything on this project that you hadn’t figured out before?
Johnson: Yeah. One of the lessons that I would come away from this with is sometimes that it’s really worth interviewing not just the big, meaty characters, but for lack of a better word, the smaller players in the story. Sometimes they have a perspective no one else has.
We were able to interview Gwen Shadley, who was basically a lab technologist. But the main focus of her work is that is that she is able to take blood samples and get DNA from them. She was so excited about her work. When I talked with her, unfortunately, she had been laid off. But when I listened to her talk about her work, she talked about it in a way that brought out this beauty in the science. It was kind of a reminder to me.
I’ve had that happen before. On medical stories, I’m always reminded how good an idea it is to make sure you interview not just one but several nurses, because nurses see patients on a day-to-day basis. They see patients at rawer moments than doctors do sometimes. And they’re not always so worried about how elements of a story fit with the institution’s image. It’s very hard for doctors sometimes to talk about everything that goes on in their work, because there are things that happen, even at the best hospitals, that aren’t always good or don’t always sound good, but they’re part of that reality. Nurses are a little bit more willing to go there.
Gallagher: We knew from the beginning it was a big story. What we told each other was our challenge was to rise to this story. That was our attitude from day one. If this didn’t work, it wasn’t because of the story, it was because of us.
Johnson: Who’s doing what is less important, but it really helped having two people. One of the sections I really liked is in the second story. That second one is a really heavy science story, yet it’s got this nice emotional moment when Nicholas has gotten sick again. One of the most horrible things about his illness is that he can’t eat real food for long periods of time. In the midst of all these scientists trying to figure out the mechanics of his illness at the molecular level, he gets to the point where he says, “Give me my food. I’d rather be sick.”
I read the mom’s journal first and then after I finished, Kathleen read it. It turned out it was something I had highlighted and somehow had never put it in the story, but she came across it again and wrote a whole section around it. I would have missed it.
We were very lucky, because Nicholas was a terrific character. He was a great little kid. He wasn’t perfect, the sick kid who’s beatific, or some sad, passive, wounded person stuck in victimhood. He’s a very active little boy who’s got his good days and his bad days. He was going to become an interesting character because he wasn’t one-dimensional.
There were other elements, too. We didn’t find this out until we got deeper into the story, but it turned out to have an interesting theme of this borderline between research and medicine. When it is appropriate for research to give way to something that’s treatment? In this case, it’s something the doctors themselves had to navigate very carefully.
There’s that point in the story where it’s being presented at the hospital that this was being done for Nicholas, and then in another setting it was represented that the genome work was being done because it would further the science. There was this moment where you don’t feel like they’re being dishonest, you get the idea that it's really complicated.
Johnson: That came very organically. It wasn’t something we’d anticipated, but as we asked about the process more, we knew that they’d at least have to have asked the institutional review board at the medical college about whether or not guidelines would have to be set up to govern Nicholas’ treatment. It was just in going through that process and checking it that we realized they had to do this very careful little dance.
In this multimedia era, what relationship did you have working with or without the photographer and videographer?
Gallagher: The photographer, Gary Porter, was with us early on. He went to the family’s house once without us and gave us some information from that visit. He went to Las Vegas when they went on a Make-a-Wish trip, which neither Mark nor I went on. So he was really critical in documenting it and helping to establish rapport with the family. There were many times when we would all go to visit together.
The videographer, Alison [Sherwood], got more involved toward the end. In the beginning, Gary did a lot of the videos. Part of that was we weren’t sure where the story was going in the beginning, so Alison came in later when we knew what the story was and when she was starting to put it together.
Lou Saldivar, the graphic artist, he probably got involved about halfway through. He went off and did his own research for the graphics, and it was difficult at first to integrate what he knew with what we knew and have all of us agree on the graphic. But in the end, I think it produced really fabulous graphics. We got a lot of comments from people about that graphic on the first day. It really added to the story, I think partly because he did his own research. He actually met with the surgeon, Dr. [Marjorie] Arca, to pin down what exactly happened in these surgeries on Nicholas.
Anything else?
Johnson: Two small things, both sort of related to the science. I thought some readers might have wondered why we went into such detail about how the machinery worked.
One part of that is just a personal feeling. I wanted to demystify the process, or at least try to. This is a difficult era for science in general. I think there’s a lot of suspicion. Some of that is because people don’t understand entirely how something works. My own mom is a good example of this, because she’s an extremely intelligent woman, a historian. We had a discussion about evolution some time ago. I was surprised to find that she had kind of shifted and was on the fence toward creative, intelligent design. I was shocked, but the main thing I remember is that she felt like scientists were asking us to take a lot on faith, with things we can’t picture. That’s something I think that journalists can do to help. If we can get people to picture how a process works, then it’s not so much taking it on faith. It makes sense that it works.
The other thing is that this is a story that uses some really fancy fabulous machinery – the machines that go “ping!” from Monty Python. I wanted to make it clear in the story that it’s not a matter of pushing liquid or blood into a machine, and it spits out an answer. There’s this beautiful human element.
Where they go from 16,000-and-something down to one mutation?
Johnson: Yes, when the scientists describe that process. Early on, we didn’t totally get what they were doing, but it was great. I kind of pictured some kind of CSI kind of thing, or a cop show, where they lay out 32 mug shot photos, and somehow the detective weeds out people, and they get down to one.
But this was on such a huge scale. That’s one of the things that isn’t always appreciated about scientists. They can create the most fabulous equipment and technology. We have amazing high-speed computing power now; that’s one of the major drivers. Yet it won’t lead us to the answers by itself. At the end of the day, it’s still human beings taking the computer printout and using their experience to pull the most from the information.
Tell me how you first heard about Nicholas Volker.
Gallagher: I was talking to someone about technologies going on in Wisconsin, and this person just happened to mention that they had sequenced all the genes of a child at Children’s Hospital. I actually didn’t say anything when that little tidbit came out, because I could tell the person felt funny about saying it. So I let it go, and as soon as I got off the phone, I found Mark, and I said, “We better check into this.” Mark had done big stories involving Children’s Hospital in the past, and so he started asking them about it, and the PR people didn’t know what we were talking about.
That’s always a good sign.Gallagher: So it took a while. I think I got the tip sometime around the holidays, and I don’t think we met the family until at least late February.
Was the family or the hospital resistant?
Gallagher: The mother actually told us just a little while ago that she had been trying to get some publicity for Nicholas and had actually pitched the story to another reporter.
At your paper?
Gallagher: At a different publication. I don’t know what she pitched. I don’t know if she pitched the gene thing, or if it was just that she had a sick kid. So I don’t want to pass judgment on the other reporter.
It sounds like you knew right away you had a big story.
Gallagher: The source said, “All the genes.” Because I cover biotech, I knew that that was something different.
Johnson: I think the tip that she had was that they had already sequenced a child’s genes and used it for a diagnosis. I think she knew that they’d found a mutation, and it was something never seen before. Any one of those things would have been fascinating. Venturing into this new area, there were a lot of firsts about it.
Having a story that’s new or different, there’s a part of it that’s very exciting, but there’s also another part. Editors always feel a little more comfortable if something like it has been published before. “Oh, we’ve seen a story like that in The New York Times, the L.A. Times, The Wall Street Journal.” You start to question it if you haven’t seen it before...
You wonder if there's a reason you haven't seen it?
Johnson: Yes, for good reasons, it makes editors fairly cautious, and questioning.
Did you have much of that kind of response to negotiate with this story?
Johnson: No. We started meeting with editors even before we knew if the family would agree to talk to us. I didn’t think about it much at the time, but now it strikes me that we were starting this before we or the doctors or the family knew how the story was going to end. That was kind of a tricky thing.
It’s so much easier to get people’s permission, to get people to go along and talk with you afterward, if there’s a good outcome. But at the beginning, anything could have happened. They could have discovered a mistake in the science. The treatment they prescribed could have turned out badly, and maybe not even because there was a mistake – maybe just because it was inherently risky. All of those things would have made it a dicey proposition for both the doctors and the family.
How did reporting work?
Gallagher: Mark and I were the primary reporters on the project. We met the family together the first time, and then we started saying we were going to divide things, but most of the time, certainly the initial three or four times with the family, we both went. And it just worked really well, especially early on. We did a lot of stuff together, because it was such a hard topic to tackle. I remember walking out of an early interview with one of the geneticists, thinking, “I’m not sure I know what that guy was talking about.” It was such a complicated topic.
We found that we had a good rhythm doing interviews together. You had to ask a question, and when they answered, you really had to think about it. It helped to have two people asking the questions. We’d go in with prepared questions. I knew what a genome was, but I didn’t understand a lot about how you would sequence DNA. I had a vague recollection of Mendelian genetics, but this was a lot more complicated than just knowing that your brown eyes come from your mother.
Johnson: We had done some stories together during the previous year on swine flu. It wasn’t my beat, but another reporter who had been covering that was heavily into our paper’s BPA investigation, and that became a full-time job. So I ended up picking up swine flu. Kathleen covers biosciences, and she knew a lot about vaccine makers, so we collaborated on a couple of stories to do with that.
We had maybe one or two things that we disagreed on early on, but essentially, we both trusted each other.
Gallagher: I learned a lot from Mark. When we were writing Day One, he just kept piling information into the story. I was pretty freaked out at first: “We have so much we’re putting in. We’ve got to make sense of this.” But we just kept piling it in, and then just whittling and whittling and whittling. I wouldn’t have put that much in without whittling along the way.
He has a way of making sure that each section in a story is a story in and of itself, with a beginning and an end. That was immensely helpful. Still, everybody in the newsroom was betting we were going to have a fight – that it would be because of me. They think I have a volatile personality, but we never had one fight.
[To Johnson] Did you know that there was a newsroom bet that you two would fight?Johnson: When Kathleen said she had a bet with somebody in the business section, I thought it might have been half because of me. I’ve worked in teams and done stuff by myself. I always feel like if it’s a longer story, I need to forewarn people, “I get really hyper later on. I might do stuff that drives you nuts. I’ll try to keep it in check.”
One of my other characteristics is that I’m not neat. My desk is a disaster. During the time we were actually doing the writing or going through interview transcripts, Kathleen would sit at my desk. In between sections of doing something, she’d just start straightening. I’m used to living with my mess, but other people aren’t.
Gallagher: One thing that worked really well was an idea we got from one of the other reporters here. John Diedrich has done a lot of projects – really neat projects, a lot of them having to do with crime and the criminal justice system. He observed from sitting in court so much that a lot of lawyers organize themselves with binders. So he uses binders to organize his projects. Mark and I learned that he was doing this, and so we decided to do it, too. All the transcribed interviews with doctors went in one binder, and then all our transcribed interviews with the family went into another, and all the academic papers we read went into another, and so on.
There were two really great things about that: One was that as we edited the story, when the editors were asking questions, we could find anything in a minute. The other great thing was when it came to putting together the video and looking for quotes to embed in the story, we could just go to those binders, and we had all the transcripts there.
So the project wasn’t dependent on the person who did the interview digging through something to get it to other people.
Gallagher: If we both got hit by a beer truck, they would have found everything in the binders. Everyone on the project knew how we were doing it, so they could go read things themselves.
Did you learn anything on this project that you hadn’t figured out before?
Johnson: Yeah. One of the lessons that I would come away from this with is sometimes that it’s really worth interviewing not just the big, meaty characters, but for lack of a better word, the smaller players in the story. Sometimes they have a perspective no one else has.
We were able to interview Gwen Shadley, who was basically a lab technologist. But the main focus of her work is that is that she is able to take blood samples and get DNA from them. She was so excited about her work. When I talked with her, unfortunately, she had been laid off. But when I listened to her talk about her work, she talked about it in a way that brought out this beauty in the science. It was kind of a reminder to me.
I’ve had that happen before. On medical stories, I’m always reminded how good an idea it is to make sure you interview not just one but several nurses, because nurses see patients on a day-to-day basis. They see patients at rawer moments than doctors do sometimes. And they’re not always so worried about how elements of a story fit with the institution’s image. It’s very hard for doctors sometimes to talk about everything that goes on in their work, because there are things that happen, even at the best hospitals, that aren’t always good or don’t always sound good, but they’re part of that reality. Nurses are a little bit more willing to go there.
Gallagher: We knew from the beginning it was a big story. What we told each other was our challenge was to rise to this story. That was our attitude from day one. If this didn’t work, it wasn’t because of the story, it was because of us.
Johnson: Who’s doing what is less important, but it really helped having two people. One of the sections I really liked is in the second story. That second one is a really heavy science story, yet it’s got this nice emotional moment when Nicholas has gotten sick again. One of the most horrible things about his illness is that he can’t eat real food for long periods of time. In the midst of all these scientists trying to figure out the mechanics of his illness at the molecular level, he gets to the point where he says, “Give me my food. I’d rather be sick.”
I read the mom’s journal first and then after I finished, Kathleen read it. It turned out it was something I had highlighted and somehow had never put it in the story, but she came across it again and wrote a whole section around it. I would have missed it.
We were very lucky, because Nicholas was a terrific character. He was a great little kid. He wasn’t perfect, the sick kid who’s beatific, or some sad, passive, wounded person stuck in victimhood. He’s a very active little boy who’s got his good days and his bad days. He was going to become an interesting character because he wasn’t one-dimensional.
There were other elements, too. We didn’t find this out until we got deeper into the story, but it turned out to have an interesting theme of this borderline between research and medicine. When it is appropriate for research to give way to something that’s treatment? In this case, it’s something the doctors themselves had to navigate very carefully.
There’s that point in the story where it’s being presented at the hospital that this was being done for Nicholas, and then in another setting it was represented that the genome work was being done because it would further the science. There was this moment where you don’t feel like they’re being dishonest, you get the idea that it's really complicated.
Johnson: That came very organically. It wasn’t something we’d anticipated, but as we asked about the process more, we knew that they’d at least have to have asked the institutional review board at the medical college about whether or not guidelines would have to be set up to govern Nicholas’ treatment. It was just in going through that process and checking it that we realized they had to do this very careful little dance.
In this multimedia era, what relationship did you have working with or without the photographer and videographer?
Gallagher: The photographer, Gary Porter, was with us early on. He went to the family’s house once without us and gave us some information from that visit. He went to Las Vegas when they went on a Make-a-Wish trip, which neither Mark nor I went on. So he was really critical in documenting it and helping to establish rapport with the family. There were many times when we would all go to visit together.
The videographer, Alison [Sherwood], got more involved toward the end. In the beginning, Gary did a lot of the videos. Part of that was we weren’t sure where the story was going in the beginning, so Alison came in later when we knew what the story was and when she was starting to put it together.
Lou Saldivar, the graphic artist, he probably got involved about halfway through. He went off and did his own research for the graphics, and it was difficult at first to integrate what he knew with what we knew and have all of us agree on the graphic. But in the end, I think it produced really fabulous graphics. We got a lot of comments from people about that graphic on the first day. It really added to the story, I think partly because he did his own research. He actually met with the surgeon, Dr. [Marjorie] Arca, to pin down what exactly happened in these surgeries on Nicholas.
Anything else?
Johnson: Two small things, both sort of related to the science. I thought some readers might have wondered why we went into such detail about how the machinery worked.
One part of that is just a personal feeling. I wanted to demystify the process, or at least try to. This is a difficult era for science in general. I think there’s a lot of suspicion. Some of that is because people don’t understand entirely how something works. My own mom is a good example of this, because she’s an extremely intelligent woman, a historian. We had a discussion about evolution some time ago. I was surprised to find that she had kind of shifted and was on the fence toward creative, intelligent design. I was shocked, but the main thing I remember is that she felt like scientists were asking us to take a lot on faith, with things we can’t picture. That’s something I think that journalists can do to help. If we can get people to picture how a process works, then it’s not so much taking it on faith. It makes sense that it works.
The other thing is that this is a story that uses some really fancy fabulous machinery – the machines that go “ping!” from Monty Python. I wanted to make it clear in the story that it’s not a matter of pushing liquid or blood into a machine, and it spits out an answer. There’s this beautiful human element.
Where they go from 16,000-and-something down to one mutation?
Johnson: Yes, when the scientists describe that process. Early on, we didn’t totally get what they were doing, but it was great. I kind of pictured some kind of CSI kind of thing, or a cop show, where they lay out 32 mug shot photos, and somehow the detective weeds out people, and they get down to one.
But this was on such a huge scale. That’s one of the things that isn’t always appreciated about scientists. They can create the most fabulous equipment and technology. We have amazing high-speed computing power now; that’s one of the major drivers. Yet it won’t lead us to the answers by itself. At the end of the day, it’s still human beings taking the computer printout and using their experience to pull the most from the information.
