Garrett Saine of Cleveland, N.C. stopped breathing several times on a Sunday. His newborn screening sample sat in a closed state lab while he fought for his life. The formula and breast milk he was fed in the first 11 days of his life was poisoning his body. No one knew yet he had galactosemia.
Saine is not alone. Many other babies in the country are at risk of death and brain damage as they wait on delayed test results. Ellen Gabler of the Milwaukee Journal Sentinel investigated, researched and reported Saine’s story along with others in her article “Deadly Delays.” The piece won a 2014 USC Annenberg Selden Ring Award and a 2013 Taylor Family Award for Fairness in Newspapers.
Finding the Data
Gabler began working on the story when a science reporter at her paper got a tip about a baby in Wisconsin who nearly died because his newborn screening test was delayed. For more than five months, Gabler interviewed people and tried to access records to collect data from every state. She filed an open records request.
“The most challenging thing was trying to get the data. People really did not want me to have it. They tried all sorts of things,” Gabler said. “As soon as I sent the request, these newborn screening people were on this listserv together and they were talking about me and trying to find ways to not give me the information.”
Gabler got the data from 31 states and compiled statistics about each state, including which state was the worst and overall country performance. She believes she could have compiled information from all of the states if the story was prolonged, but she didn’t want any more time to pass.
“I was really stressed out because I was worried that this could be happening to other kids right now and we were kind of taking a while to get this story out,” Gabler said.
Asking Tough Questions
A major challenge for Gabler was finding individual cases of newborns that have been affected by slow returns of test results because health information is confidential.
“What I had to do was look for lawsuits. I used LexisNexis and Google,” Gabler said. “I was putting certain key words like newborn screening or inborn metabolic error into search engines.”
The way she was most successful in connecting with people was by writing on the walls of Facebook groups for parents of kids that have these newborn disorders she was focusing on, like galactosemia, which is seen in about 1 in every 30,000 to 60,000 newborns.
“You have to constantly be questioning your own assumptions and you don’t want to be thinking of it as trying to prove a point,” Gabler said. “You want to find out what is actually happening. In this case what was happening is that tests were late. And that’s a fact.”
During her interviews with Garrett’s mom, Kristin, Gabler had to ask a lot of tough questions and push her on details that caused her to struggle for the right words at times. She said she spoke to her over 20 times to fact check and follow-up.
“The hardest thing was asking her how damaged [her son] was,” said Gabler. “I don’t want to have to ask someone that.”
Gabler also asked Kristin for permission to speak with Saine’s doctor to get a medical perspective on the story. She wanted to ensure that the information was accurate and add also an impartial voice to the story.
"[This problem] needs to be fixed," Saine’s pediatrician, Hal Levin, said. "I certainly don't want another baby suffering."
Satisfaction - At Last
Throughout the piece, the reader can access short videos, photo galleries and infographics. A video toward the end of the article shows Aiden, one of the baby’s affected by the test delays, in physical therapy. Sidebars give the reader more details about the process, such as how much a newborn screening test costs.
In the wake of “Deadly Delays,” the American Hospital Association sent out an alert to all of the hospitals in the country urging prompt attention to the issue. Many states and Congress passed laws about newborn screenings. Seeing all of the change her work generated was very rewarding for Gabler.
“A lot of people become journalists because they want to make the world a better place,” Gabler said. “That’s what I think our real purpose is…to figure out what is actually going on and tell people. So, if it’s bad it can be fixed.”
Less than 24 hours after coming home, Colton Hidde wound up back in the hospital facing a life-or-death struggle that could have been avoided. Source: Family photo.