Jan. 17 2020 -- Charles Johnson never thought his wife, Kira, would be among the 700 women who die during childbirth every year in this country.
“We’re talking about a woman that spoke five languages fluently, who had her pilot’s license, who was an avid skydiver,” he says
Kira Johnson died on April 13, 2016, at Cedars-Sinai Medical Center in Los Angeles about 10 hours after giving birth to their second son, Langston. The 39-year old mother of two bled to death after a routine, prescheduled cesarean section.
“As I’m sitting there by Kira’s bedside, just kind of watching her rest, I looked down and I noticed there’s blood coming from the catheter,” Johnson says.
He says he notified hospital staff.
“They come and they examine her and do a couple of things at this point; they order lab work, some tests including a CT scan, and it was supposed to be performed stat,” Johnson says.
The bloodwork came back showing levels that were abnormally low, and an ultrasound showed an abnormal mass of clotted blood.
But Johnson says they waited and waited for the CT scan to look for the cause of the bleeding as the hours ticked away.
He says around 6:44 p.m., Kira was classified a surgical emergency.
“By 7 o’clock, her condition is continuing to deteriorate; by this time she’s shivering uncontrollably, so I’m asking look, where’s the CT scan? Are we taking her back to surgery? And we’re just getting this runaround.”
Around 12:30 a.m., almost 10 hours after giving birth, Kira was taken back to surgery.
“They wheel her back in there, and the doors close behind her, and that was the last time I saw my wife alive.”
“They opened her up, there was 3½ liters of blood in her abdomen, and she coded immediately.”
After his wife’s death, Johnson started a nonprofit organization called 4Kira4Moms to generate awareness and help prevent more deaths. The United States has the highest maternal mortality rate of any developed country, and African American women like Kira are overly affected. They are 209% more likely to die than white women.
Charles Johnson believes had Kira been white, she would still be alive.
“Numbers don’t lie,” He says. “I’ve been accused of making this a race issue. And my response to that is that, look, I didn’t make it a racial issue, the statistics did. This isn’t a racial, this is a human rights issue, and we can’t address it without having a very transparent, very candid conversation about the manner in which it’s disproportionately affecting African American women.”
Johnson, who filed a lawsuit against the hospital, also testified before Congress and worked to pass HR 1318, the Preventing Maternal Deaths Act of 2018, which became law last December.
In a statement, Cedars-Sinai said it could not comment on Kira’s case due to privacy concerns and praised Johnson’s “leadership in raising awareness of preventable maternal deaths.”
The federal bill provides funding to states for maternal mortality review committees (MMRCs). All but three states either have committees or are setting them up, according to data provided by the American College of Obstetricians and Gynecologists.
David Goodman, MD, leader of the Maternal Health Team in the CDC’s Division of Reproductive Health, says historically, these review committees have struggled. The CDC began tracking pregnancy-related deaths in 1986.
“CDC has been working with MMRCs to address some of those barriers, such as implementing standardized approaches to gathering information and using it effectively,” Goodman says. In September, the CDC received more than $45 million to spend over the next 5 years supporting these committees.
‘Complex National Problem’
In a September report, the CDC called the high rates of maternal death among African American, American Indian, and Alaska Native women a “complex national problem.”
The report, which looked at pregnancy-related deaths from 2007 to 2016, found:
- Overall deaths increased from 15.0 to 17.0 per 100,000 births.
- The disparities for women over the age of 30 were even higher: The death rate for black, American Indian, and Alaska Native women was 4 to 5 times higher than it was for white women.
- The disparities persisted over time.
- Most deaths were preventable.
“There is an urgent need to identify and evaluate the complex factors contributing to these disparities and to design interventions that will reduce preventable pregnancy-related deaths,” says Emily Petersen, MD, a medical officer at the CDC’s Division of Reproductive Health and lead author of the report.
Texas state Rep. Shawn Thierry represents House District 146 in Houston. She’s also looking for solutions. Her district has some of the highest maternal mortality and morbidity rates in the state.
Thierry, a lawyer by trade, had a delivery nightmare of her own 7 years ago.
“They told me I should get a C-section, and I ended up getting something called a high block epidural.”
Epidurals are often used in C-sections. It’s a procedure where a narcotic or anesthetic is injected directly into the spinal fluid to block pain.
“Instead of numbing and paralyzing my legs, the medication was going straight to my heart, and I felt it. I knew that something was going very wrong,” she recalled. “I couldn’t breathe and I started telling the doctors in the room what was going on. For several minutes, they said 'You can’t be in pain,' and I said 'No, I am.' We were going around and around.”
She passed out. She didn’t lose the baby, but the situation still haunts her.
“It was a horrific birth experience; I have no recollection of having a child.”
And she was shocked by the doctor’s response.
“When my doctor finally came back in my room hours later, the first thing he said to me was ‘Hey crazy lady,’ and I said 'Excuse me?' I didn’t know him well enough for him to even say anything like that to me, and he said ‘I heard you went crazy in there.’ And I said 'You mean trying to save my own life and live?'”
Thierry has sponsored legislation that would create the first statewide online data registry to collect mortality information and medical records from women across Texas, and one that would require implicit bias and cultural competency training for licensed medical professionals and medical students.
“We’re trying to have conversations now that have never been comfortable to have, we’re addressing racism and discrimination and bias. It has to be a comprehensive approach from beginning to end.”
Other actions include:
- The Alliance for Innovation on Maternal Health, or AIM, in partnership with the American College of Obstetricians and Gynecologists, has developed a set of “safety bundles” they say represent best practices for maternity care. These toolkits contain action measures for complications like obstetrical bleeding; severe high blood pressure/preeclampsia and blood clots; as well as cutting racial disparities in care before and after birth.
- In 2019, U.S. Rep. Ayanna Pressley, D-MA, introduced the Healthy MOMMIES Act to promote a community-based, holistic approach to maternal care and address disparities and other critical environmental causes.
- The National Birth Equity Collaborative does research and provides anti-racism and implicit bias training focused on mothers and babies to hospitals, health departments, state governments, and large nonprofits.
The Association of Women’s Health, Obstetric and Neonatal Nurses (AWHONN) has created a list of post-birth warning signs for women to watch out for in the first year after giving birth. They include pain in your chest, obstructed breathing or shortness of breath, excessive bleeding or large blood clots, a headache that doesn’t improve, red or swollen legs that are painful or warm to touch, and fever.
‘It’s How They’ve Been Treated’
Mark Clapp, MD, a maternal fetal medicine doctor at Massachusetts General Hospital in Boston, says the “appalling” death rates reflect broader issues in society, including racism.
Clapp is doing research on ways to predict which women are going to have a bad outcome. He says this is bigger than just thinking black women have a different biology, or have higher rates of chronic conditions that can affect pregnancy and birth.
“It’s how they’ve been treated in society, how they access the health care system, and how we as providers listen to them, treat them, and manage them.”
In California, iDREAM for Racial Health Equity has worked to address disparities in care for the last 25 years.
Founder and Executive Director Wenonah Valentine is fighting to change the narrative.
“You’re either going to be part of the problem or you’re going to be part of the solution, so all of us have to learn to speak a language of respect and speak a language of support and speak a language of healing and speak a language of hope,” she says. “We all have to take responsibility for that.”