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Heartbreaking story tied to maternal health crisis hits prime time

 

Dr. Neel Shah, director of the Delivery Decisions Initiative at Ariadne Labs, embraces Charles Johnson, who lost his wife after she gave birth to one of their sons.

Dramatic rescues by heroic surgeons and tear-jerking twists of fate are the bread and butter of TV medical dramas. A recent episode of Fox’s “The Resident” delivered all that and something more: a maternal death based on a true story and a presentation of solutions that reflects recommendations by Ariadne Lab’s Delivery Decisions Initiative.

“I’ve never seen anything like it on TV,” says Dr. Neel Shah, director of the Delivery Decisions Initiative, an effort to transform childbirth care by gathering and analyzing data and working with stakeholders to implement solutions. Shah was a consultant on the episode, “If Not Now, When?” which originally aired on April 15, when about 4.5 million viewers tuned in. It’s now available online and on Hulu. “It demonstrated the humanity on all sides of maternal mortality – the wrenching effect on the families and fallibility of the clinicians who aim to care for them.”

The episode was broadcast during a significant period of activism highlighting the alarming maternal death rate in the U.S.; American women today are 50 percent more likely to die in childbirth compared to their own mothers, says Shah. He and maternal health activist Charles Johnson, whose story inspired the episode, appeared together at a panel on the maternal health crisis during the American College of Obstetricians and Gynecologists (ACOG) Annual Clinical and Scientific Meeting on May 4. (The panel, “Speaking Out on the American Maternal Health Crisis: Rethinking our Approach to Safety, Support and Racism,” was livestreamed and and can be viewed on ACOG’s Facebook page.) On May 11, the pair will reunite for the third annual March for Moms national rally held at the National Mall in Washington D.C. Shah is a co-founder and vice president of the coalition.

The episode, “If Not Now, When?” was inspired by the case of Johnson’s wife, Kira – a vibrant, accomplished, African-American woman who died in 2016 after giving birth. Kira was recovering from a scheduled cesarean section after her baby boy was delivered when she complained of severe pain. Her husband also noticed blood filling her catheter. A CT scan was ordered, but Johnson says it was never performed. After seven hours he says doctors finally examined her and realized she needed immediate medical attention. Kira, 39, died from internal bleeding from a nicked bladder. Her husband believes that had doctors intervened earlier, her life would have been saved.

Similarly, in “The Resident” episode, an African-American mother dies after giving birth, even after her husband and a medical resident raise concerns about her pain level and the amount of blood in her catheter. She dies from a bladder tear that could have been remedied if caught in time.

The episode goes beyond depicting a heartbreaking medical error; in a boardroom meeting after the death, a somber-faced hospital administrator announces new protocols:  “These will include comprehensive checklists, maternal crash carts, and simulated training drills. We need communication and teamwork to prevent all forms of bias – racial or otherwise. The United States is the most dangerous country in the developed world to give birth in. There’s no excuse for that.”

The episode underscores concerns addressed by the Delivery Decisions Initiative. The centerpiece of the initiative is the Team Birth Project, a groundbreaking approach that aims to better incorporate women’s preferences in a birth setting. The boardroom scene, with its references to checklists, teamwork, and communication, reflects Team Birth strategies that include using a whiteboard in every laboring woman’s room and a series of “huddles” with the woman and her care team.

“At the root cause of most adverse events in health care are communication failures,” Shah says. “At Ariadne Labs we develop ways to improve teamwork and communication to improve safety and ensure we’re treating those we care for with dignity.”

Johnson, 38, now raising the couple’s two sons Charles Johnson V,  5, and Langston, 3 has become a fierce advocate for maternal health. He has launched the site, 4Kira4Moms, and testified before Congress in favor of the Preventing Maternal Deaths Act, which passed in January 2019. The law established and funds state-level maternal mortality review committees, which will review every pregnancy-related death and develop recommendations.

Johnson’s testimony caught the attention of Amy Holden Jones, “The Resident” co-creator, executive producer, and writer, who contacted Johnson about weaving his wife’s story into an episode. Holden Jones told Ariadne Labs via email that writers wanted to marry two storylines that showed “the very different paths that can occur in a major hospital. Your life can be dramatically saved through heroic efforts by dedicated nurses and doctors. But things can also go very wrong.”

“Honest to God, when this first happened, I thought that Kira was a complete anomaly,” says Johnson. “That a woman walked into a hospital in 2016 – someone who has access to care, who was diligent, who had done everything she needed to do – and for her not to walk out, I thought that she was the complete exception.”

But Kira’s case reflects a troubling trend: According to ACOG, the U.S. is the only industrialized nation with a rising maternal mortality rate; it increased 26 percent between 2000 and 2014.

The Atlanta-based Johnson was invited to meet with the show’s writing staff.  “I told them Kira’s story in explicit detail and then just answered a lot of their questions about the nuances about what happened, about how I felt in the moment, about what we were doing, the role that different people played, and where I felt the ball dropped,” he says. Johnson’s words moved the writing staff to tears.

Johnson wanted the episode to also address issues of racial disparity. He maintains that had Kira been white, more attention would have been paid to her pain and symptoms, and her life would have been saved. “At first, (producers) were like, ‘Well, we’re not really sure about the race card. We don’t know if the studio’s gonna go for it.’ I said,  ‘This is what is important to me.’”

Holden Jones also had initial concerns. “There was great hesitation from many quarters about race as an issue in the story,” she says. “I myself felt it. Initially, I wanted to focus on maternal mortality and not complicate it with another layer. But we had already been moved to tears by the story of Charles and Kira, and ultimately we decided to embrace the difficult reality.” According to ACOG, racial disparities in maternal mortality are staggering — black women are three to four times more likely to die from a pregnancy-related complication than non-Hispanic white women.

While the episode mirrored many aspects of the Johnsons’ story, it differed in a few key ways. In the show, the wife had an emergency C-section but in reality, Kira’s C-section had been scheduled. The character of Dr. Devon Pravesh attempts to get help for the mother. In reality, Charles felt he was a lone voice, begging for help from staff who assured him everything was normal. Moreover, the boardroom scene was entirely fictional.

“The Resident” has previously focused on medical issues addressed by Ariadne’s portfolio of projects. Daniela Lamas, an associate faculty at Ariadne Labs and physician, co-wrote an episode this season that drew on recommendations of the Serious Illness Care Program. Developed by Ariadne Labs, the program encourages clinicians to have conversations on goals, values, and priorities with patients facing a serious illness. Lamas recommended Shah to the show’s producers for assistance in fact-checking the maternal health episode’s medical issues and describing proper protocols.

Johnson says he hopes the episode and increased awareness of maternal health issues spur viewers to action. “By raising the collective consciousness, these women, these families are no longer able to be ignored,” says Johnson, who has formed a friendship with Shah over their desire to improve maternal health. “Neel and I talk a lot about this growing constituency of people who care about mothers and babies, and who have been silenced for far too long.”

-Stephanie Schorow