Deadly Delays: Q&A with Ellen Gabler from The Milwaukee Journal Sentinel

A team from The Milwaukee Journal Sentinel is being honored with one of journalism’s most prestigious awards today, the Selden Ring from the USC Annenberg School for Communication Journalism, for its series Deadly Delays, about the failures of the newborn screening system. Here’s how Annenberg described the effort:

The Milwaukee Journal Sentinel investigative team analyzed information from nearly 3 million newborn screening tests to produce this first-ever look at delays in newborn screening from hospitals across the country.

The team interwove a “rock-solid foundation of data with powerful human detail,” stated the Selden Ring judges. “They found that hundreds of thousands of tests arrive late at labs nationwide, with sometimes devastating consequences.” The jury further hailed the group for making hospital data available online that “allows readers to check their hospitals, a hugely valuable public service.”

The team included reporters Ellen Gabler, Mark Johnson and John Fauber; developer Allan James Vestal; and photographer Kristyna Wentz-Graff.

I asked Gabler about the story via email. The first set of responses is below. I will post the second half next week.

Q: Why did you decide to take a national look at newborn health screenings?

A: The idea was sparked when my colleague, Mark Johnson, a health and science reporter at the paper, heard about a baby who nearly died from a rare genetic disorder. Doctors had to go to great lengths to save the child because he got very sick before results from his newborn screening test were returned. Had his condition been identified earlier, the baby could have been put on a special diet and sugar water, avoiding massive medical complications and lifelong consequences. 

Another thing that was appealing about this story is that it potentially affects nearly every person who has a baby or knows someone who has a baby. Newborn screening is required throughout the country. Nearly every baby has their heel pricked within a day or two of birth. Spots of blood are collected on a filter card and that filter card is supposed to be sent within 24 hours to a state lab where it is tested for rare, yet deadly, disorders. So it's something parents know about or should know about. 

Q: Did you have one central question you were trying to answer with this series and, if so, what was it?

A: I'm not sure if there was one central question but my big task was to quantify the problem of delayed samples nationwide. One thing I love about investigative reporting is that it is meant to get rid of the “he said, she said” nonsense and just show what is actually happening. In fact, many advocates and medical experts we contacted initially said delays with babies’ blood samples happened very rarely or “used to” happen. But no one really knew the scope of the problem because it had never been quantified.

By requesting data from all 50 states–with specific names of hospitals–I was basically trying to answer the question of, "Where is this happening specifically, and how often?" 

John Fauber's story looked at how labs were closed on weekends, which adds to delays. So he was trying to examine where and why that occurs. 

Q: With different rules in different states and literally thousands of hospitals following guidelines in different ways, how did you go about gathering and organizing the evidence?

A: It was a lot of work. I started first with Wisconsin and they were immediately difficult to deal with and were not going to be forthcoming with the data.

With every records request and request for data, I try to have a phone conversation or in person discussion with someone. In this case, the state lab director said he would determine what information I needed to tell my story and then he’d let me know. I knew then that things were not going to come easily. 

With Wisconsin stalling, I just decided to request data from the entire country. Each state has to collect the same type of data for every baby’s test – and all that information is kept in databases. The data fields I was requesting did not include names or outcomes of the test, so confidentiality shouldn’t have been an issue.

John Fauber had found a list of lab directors from all state labs in the country. The list had email addresses, phone numbers, titles, etc. I built a Google spreadsheet listing the lab directors for each state and the District of Columbia, then created 51 records requests using a “mail merge” so I could pop in the name of the lab director and the corresponding state to say I was requesting the records under “Arizona” public records laws, for example.

I sent the request. Lab directors around the country immediately were all pretty upset.

I spent the next two to three months negotiating for data. I had multiple conversations with officials in every single state. Several times, state officials sent me incorrect or incomplete data. I made them send it again. Sometimes I had to re-send my request to a different agency. In several cases, my request was denied and I had to figure out who else in an agency–usually the top person–would understand that this was actually a very important request that should be granted.

When data started coming in, I had to clean and analyzeit, and get it to our news apps developer, Allan James Vestal, who built this incredible interactive so people could actually see what was happening in their states and in the hospitals where their babies would be born.

Other "data" in the interactive–like if labs are open on weekends, which states have regulations about how quickly to send samples–were just gathered individually.

I emailed every state, asking them a set of questions, and followed up with them until they answered. (Sometimes it took four or more emails and phone calls to make sure they responded.)

Then I put it all into a spreadsheet and Allan again worked some magic and scooped the data into a page for each state. (He also did his own reporting to collect contact info for every state official, so parents can "contact officials" in their state if data wasn't released, for example.) 

Organization was very important in this process. I organized my contact with each state on spreadsheets (so I could remember who I had talked to) and Allan and I had a system of folders set up on our servers so I could hand the data off to him when I was done analyzing and cleaning it. 

Next: Gabler walks us through how the story came together and what happened as a result. Read it here.