'My Wife's Legacy Gives a Voice to the Voiceless': Charles Johnson's Loss Launched a Maternal Health Revolution
When Charles Johnson IV accompanied his wife, Kira, to Cedars-Sinai Medical Center on April 12, 2016, for the birth of their second child, he never expected to leave there without her. The couple had one son already, Charles V, and Kira's second pregnancy had been textbook normal. The 39-year-old was in perfect health.
Kira lived quite an amazing life—she was fluent in five languages, had her pilot's license, raced cars, ran marathons—and was loved beyond measure by her husband. "We had a grand plan of raising kids who would change the world," Johnson says. Kira's scheduled cesarean section should've been routine; a normal surgical birth for a healthy, uncomplicated pregnancy. But shortly after their son, Langston, was born healthy, it became apparent to Johnson that his wife's recovery was anything but normal.
Johnson noticed Kira's catheter turn pink with blood. "I brought it to the attention of the staff and they called for several tests, including a CT scan that was supposed to be performed stat," he says. That was around 4 p.m., but an hour later, doctors still did not take her for a CT scan. "The blood work comes back and shows all her blood levels are abnormal, she's sensitive to the touch, and beginning to lose color, so there are clear signs early on that Kira is hemorrhaging significantly internally, but still no CT scan," he continues. By 9 p.m., Johnson pulled a nurse aside to ask why they never took her to the scan. "The woman looked me right in the eyes and said, 'Sir, your wife just isn't a priority right now.'"
Finally, after midnight, staff members removed Kira from her recovery room and transported her to an operating suite. As they walked down the hall, Johnson recalls Kira turning to him and saying, "Baby, I'm scared." They continued down the hall until they reached double doors to the OR and Johnson was told he could not go any further. "'One of the doctors said 'It's not a big deal, sometimes these things happen ... She'll be back in 15 minutes.'"
That was the last time Johnson saw his wife alive.
The Night That Changed Everything
Kira Johnson was left for more than ten hours with a hemorrhage bleeding into her abdomen. When the surgical team reopened Kira's incision, they found 3.5 liters of blood in her abdomen—normal adult blood volume is around five liters. Kira lost about 70 percent of her circulating blood volume while waiting for doctors to address her and her husband's concerns. She coded on the operating table and they were unable to revive her.
"The thing that we are clear about is that there was a failure for the staff and the team at Cedars to see my wife the same way that they would view their daughter, their sister, or their wife," says Johnson. "Kira deserved so much better."
Johnson says that as a result of his wife's death, he has recurring nightmares. "I sit up at night and I struggle. What should I have done differently? Should I have yelled, should I have grabbed a doctor by the collar? But that is the reality of our lived experience," he says.
Advocating for Change
Johnson decided to share Kira's story publicly ahead of Mother's Day 2017, and he quickly learned that Kira's birthing experience is not unique. It's not an outlier. What happened to this family happens every day in the U.S. Children are left motherless, husbands are widowed, families are shattered, and the trajectory of entire lives is altered. In the United States, 700 women die from often preventable pregnancy or childbirth complications each year. An additional 60,000 more experience highly preventable birth injuries. Black women are three times more likely to die from those complications than white women.
After Charles shared his family's story, people began to reach out to tell their own stories of loss. "As I'm hearing more and more of these stories, I begin to think to myself, 'Hold on, something's not quite right.' And that's when I begin to do the research myself and to come to understand that we are in the midst of what truly is a maternal mortality crisis, right here in the United States."
As he dug into the research and realized just how many people have lost their lives during childbirth or from childbirth complications, he decided to take action and formed a nonprofit organization called 4Kira4Moms. "First and foremost, we advocate," he says. "We try and become a voice for the voiceless. There are so many families that have been suffering in silence and don't have the platform, and these stories are going unnoticed. We try and give a voice to that and advocate for change."
In 2018, Charles took his advocacy work one step further and worked with Congress to pass the Preventing Maternal Deaths Act. The law provides funding—$12 million per year for five years—for states to create committees whose goal will be to track, review, and investigate incidents of maternal mortality. The bill was passed with unanimous support by both the House and the Senate and was signed into law on December 21, 2018.
These review committees will be essential in determining at-risk groups and will provide data that will allow mothers to be better cared for during childbirth and throughout the postpartum period.
As Charles' advocacy work increased, he learned that it's not just mothers who are suffering at the hands of the U.S. medical system, but patients in general. In California, he is pushing for a new ballot initiative—the Fairness for Injured Patients Act—that will require malpractice lawsuits to be heard before a judge and jury instead of settled out of court. The law, if passed, will also remove a cap that was put in place in 1975 that limits the financial award some patients receive as a result of malpractice suits to $250,000.
Keeping Hope in the Family
The Johnsons work hard to keep Kira centered in their family. Charles says he never wants talking about her to be taboo. "I want [my sons] to always have this beautiful picture in their mind of who she is and what she stands for." Their home is filled with photos and stories about Kira and the incredible life that she lived.
But it's not easy. The heartbreak and loss will always be with them, even in the happiest times. "Even though there's a lot of smiles, there's a lot of joy, sometimes it's really difficult," explains Charles. "No matter how over-the-top the birthday party is, or how many times you jump up and down singing 'Baby Shark,' or how many soccer teams you coach, there's nothing that can fill that gap when your child wakes up in the middle of the night asking why mommy can't come home."
That's why he does what he does. His advocacy work isn't just for him. It's for fathers around the country who have to answer that same question for their own children. It's for children who never had the chance to be held by their mothers; it's for grandparents who lost their daughter. And it's for his own children, so that when they go out into the world and start families of their own they don't experience the heartbreak of loss.
Read more of Parents.com's maternal health investigation here.