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'An amazing first step': Advocates hail Congress's maternal mortality prevention bill

The bill authorizes an unprecedented $12 million a year for five years to prevent mothers' deaths during and after childbirth, which happen at alarming rates in America.
Kira Johnson
Kira Johnson, 39, died hours after giving birth to her son, Langston, in what her husband, Charles Johnson IV, describes as a death that hospital staff could have prevented. "This was not just a medical tragedy," he said. "This was a medical catastrophe."Courtesy of Charles Johnson IV

Kira Johnson's presence is everywhere in her two young sons' lives. Poster-sized pictures of her fill their house. They regularly watch home videos of her. And their father, Kira's husband Charles Johnson IV, brings her sense of adventure and determination into everything they do as a family.

"I try to do Kira-style, like Mommy would do it," Johnson said. "My mantra is just wake up and make Mommy proud."

And while Johnson loves to talk about Kira with his sons, 4-year-old Charles Johnson V and 2-year-old Langston, there are some questions they ask about their mother — who died hours after giving birth to Langston — that he struggles to answer.

Image: Kira Johnson and her husband, Charles Johnson IV, laugh with their son Charles Johnson V at his birthday party.
Kira Johnson and her husband, Charles Johnson IV, with their son Charles Johnson V at his birthday party.Courtesy of Charles Johnson IV

"Charles will ask, 'Does Mommy like soccer?' and I'm like, 'Mommy loves soccer.' And he's like, 'Well, can she come to my game?" Johnson said. "Or Charles will ask: 'Is Mommy mad at me? Why won't she come home?' You try your best to articulate: 'Well, Mommy is in heaven. She's doing important work with God.' And he says, 'I want to go to heaven.' Those are the things that are the most painful.'"

Kira, 39, an accomplished businesswoman in hospitality and education, died in the early hours of April 13, 2016, a day after giving birth to Langston via a scheduled Cesarean section.

The Johnsons' story is far from an isolated incident: Each year in the United States, about 700 women die as a result of pregnancy or delivery issues — while 50,000 experience severe complications, according to the Centers for Disease Control and Prevention.

Despite the stunning statistics — America ranks the worst out of all developed nations on maternal mortality, a rate based on deaths of women while giving birth or within a year after — attempts to address the crisis have failed on a federal level.

But last week, Congress unanimously passed a bill that authorizes $60 million over the next five years to prevent maternal mortality in America. The money will fund maternal health review committees in all 50 states, enabling them to collect data on what is killing women during or after childbirth. Every task force will have to follow the same guidelines to receive the grants, which will provide uniformity to maternal mortality data collection across states for the first time.

"This is an amazing first step," said Dr. Lisa Hollier, president of the American College of Obstetricians and Gynecologists. "Having high-quality data that is comparable across jurisdictions is going to be so very valuable to our prevention efforts."

Not every state has such a task force and many of those that do face funding shortages. The federal dollars will inject them with cash, as well as provide money needed to create maternal mortality review committees in the remaining states.

The goal of tracking the information is to provide basis for policy changes, which could include creating new protocols for dealing with issues during or after delivery.

"What I anticipate will be able to come from having better data is more specific solutions to address the problems that we're seeing, and solutions that are designed to meet the need of the particular populations that are being served," Hollier said.

Advocates are hopeful that the bill will narrow racial disparities in maternal health. Black women are three to four times more likely than white women to die from pregnancy-related causes nationwide, one of the severest racial discrepancies in all of women's health. That rate persists even when black women have higher income or more education, leading to speculation that implicit bias among health care providers is contributing to the problem.

"I'm really hoping this will lead to more legislation," said Monifa Bandele, senior vice president of MomsRising, a nonprofit organization that advocates for the rights of women and mothers. "There needs to be training for hospitals and every single health care provider that comes into contact with pregnant women in implicit and explicit bias."

In Texas, a committee has already made progress on collecting data. The state's Maternal Mortality and Morbidity Task Force released a report this year with 10 recommendations for improving maternal mortality rates. The report found that most of Texas's maternal mortality deaths were preventable, a finding that Democratic Texas state Rep. Shawn Thierry is certain applies in other states, too.

"This is why what Congress did is so important," said Thierry, who nearly died giving birth to her daughter in 2012. In 2017, she sponsored a bill that extended funding for Texas's Maternal Mortality and Morbidity Task Force, which otherwise would have shut down.

"In these emergency situations, there will be standard protocols that each hospital will follow, and that's not happening right now," Thierry said. "It's going to have a profound effect."

Image: Texas State Representative Shawn Thierry and her four year old daughter Klaire
Texas State Representative Shawn Thierry and her daughter Klaire.Courtesy Representative Shawn Thierry

The bill, the "Preventing Maternal Mortality Act," passed unanimously in both the U.S. House and the Senate, and has gone to President Donald Trump for his signature, which Thierry said is expected later this week. The White House did not immediately respond to a request for comment to confirm that.

After Kira's death, Johnson testified to Congress about the need for better maternal health. Kira's pregnancy had been healthy and uneventful; Langston's birth at Cedars-Sinai Medical Center in Los Angeles, where the family lived at the time, was "going to be the happiest day of our lives and we really just walked into a nightmare," Johnson said.

After the C-section, Kira held Langston and seemed to be fine, Johnson said. But then he noticed a twinge of pink in her catheter — what looked like blood. He alerted medical staff, who did some bloodwork and promised to do a CT scan immediately, he said, but did not follow through.

The bloodwork showed abnormalities. Hours ticked by and Kira turned pale, then began shivering uncontrollably. By then, her catheter was filling with bright red blood. Johnson said he pleaded repeatedly with doctors to do the CT scan. Ten hours later, they brought her into surgery, where they found blood had filled her abdomen.

During surgery, Kira's heart stopped. She had hemorrhaged to death from what Johnson believes was a mistake made during her C-section incision and a lack of medical care afterward.

"The staff at Cedars-Sinai told me my wife was not a priority right now," he said of his repeated demands for a CT scan after Kira gave birth.

Johnson, 38, has filed a wrongful death and negligence lawsuit against Cedars-Sinai, which is still pending. Cedars-Sinai said in a statement to NBC News that Johnson "is demonstrating important leadership in raising awareness of preventable maternal deaths" and said Cedars-Sinai faculty members support efforts to improve care.

"While federal privacy laws prevent us from responding directly about any patient’s care without written authorization, we can share that Cedars-Sinai thoroughly investigates any situation where there are concerns about a patient’s medical care. We are always committed to making any changes needed so we can provide our patients with the highest level of care," Cedars-Sinai said.

Johnson, an entrepreneur, has turned to activism since Kira's death. He started a foundation, 4Kira4Moms, which raises awareness about maternal mortality and helps to push for legislation around it.

He and his boys have since moved from Los Angeles to Atlanta where Johnson's mother, television judge Glenda Hatchett, is helping him raise his sons.

"It's not a women's health issue. It's a human rights issue."

Johnson described the congressional bill as "a monumental first step to necessary change" for maternal mortality rates.

"For so long, this has been the country's dirty little secret," he said. "For so long, this was looked at as a 'women's issue,' and dismissed."

"It's not a women's health issue. It's a human rights issue," he continued. "Every single woman in this country should have the right to give birth to a healthy baby and live to raise that child. Period."

CORRECTION (Dec. 19, 2018, 5 p.m. ET): A previous version of this article misstated where Texas ranks for pregnancy-related deaths. The state's rate is in line with the U.S. average; it is not the highest in the developed world. (The error, previously reported, was based on years of faulty data collection on state death certificates. The Texas Maternal Mortality and Morbidity Task Force corrected the numbers in a study released in April.)