OR WAIT null SECS
“If you’re an ob/gyn, remember that these women are not statistics. They are precious mothers who are trusting you with their precious gifts.” This is one father’s story about the impact of maternal mortality and how obgyns can support the families of their lost patients.
The high rate of maternal mortality in the United States when compared to other industrialized nations has received a great deal of publicity over the past months. Many articles focus on the “why” and the “who” in their coverage of the issue, and while these are undoubtedly important questions, what often gets lost in the reporting is the “how” and the “what” - as in, How are the families of these mothers affected by their loss? and What happens to the surviving child, the father, and the rest of the family? Ob/gyns can play a role in helping the families of their lost patients by providing support.
From 2000 to 2014, the United States saw a 26.6% increase in maternal deaths.1 But during that same period, maternal mortality rates fell in similarly developed nations. As has been discussed in Contemporary OB/GYN’s previous coverage of maternal mortality, several contributing factors have been identified. Among these are obesity, cardiac disease, hemorrhage, hypertension, sepsis, thromboembolism, anesthesia complications, substance abuse and self-harm, mental health issues, disparity in care, and several other factors, with the Centers for Disease Control and Prevention (CDC) reporting in 2017 that cardiovascular disease accounted for the highest proportion of maternal mortality cases (26.5%).2 Disparities in race and ethnicity also exist in maternal mortality rates, with rates especially high for African-American mothers.3
One family’s story
On April 12, 2016, Kira Johnson, who was healthy throughout her pregnancy, went in for a routine cesarean delivery with her husband, Charles, at Cedars-Sinai Medical Center in Los Angeles. Charles and Kira’s second son, Langston, was born perfectly healthy, and Kira was taken to the post-anesthesia recovery area. During an interview with Contemporary OB/GYN, Charles recalled, “As I’m sitting there by Kira’s bedside, just looking at my family and overwhelmed with pride and this full heart after welcoming this gift into our lives, I looked down and I noticed that the catheter coming from Kira’s bedside is beginning to turn pink with blood.” After bringing this to the attention of the nurses, a series of tests were ordered, including blood work and a computed tomography (CT) scan that was supposed to be performed stat. An ultrasound showed that there was fluid building up in Kira’s abdomen and as she continued to deteriorate, there were clear signs that she was hemorrhaging. Just after midnight, she finally received the CT scan that had been ordered six hours earlier. Following the scan, she was scheduled to go into surgery. Charles recalled, “As we’re going down the hall, Kira is holding my hand and she goes, ‘Baby, I’m scared.’ As we approached the door to the OR, the doctor walking next to her bed says to me, ‘We’re going to go back in through the same incision I made earlier with the cesarean, we’ll find out what’s going wrong, and I’ll fix it. She’ll be back in 15 minutes.’” There were 3.5 L of blood in Kira’s abdomen. She coded soon thereafter.
When their first son was born, Kira made Charles promise her that he wouldn’t leave the hospital for any reason without the two of them. He made the same promise to her the second time around, but now he, his newborn son, Langston, and his 18-month-old son, also named Charles, walked through the hospital doors without her. “Kira and I were partners in every sense of the word,” Charles said, “but I found myself being thrust into this new reality of being a single dad of two VERY small children and trying to figure it out. I knew that I couldn’t replace her; I had to step into that gap as best I could, and I was going to change every single diaper, fill every bottle, and I was not going to let Langston out of my sight.”
Following the loss of a mother, family members are often forced to take on different roles. While it is usually the father’s role that changes most dramatically, the roles of other siblings and second-degree relatives, such as grandparents, aunts and uncles, may also evolve. In families in which the mother was the primary breadwinner, the father and sometimes the older children may be forced to take on a larger role in providing for the family financially. This has several repercussions. Since the father must focus more time and energy on both providing for the family and caring for the newborn infant, second-degree relatives may decide to either temporarily or permanently move into the household to help raise the infant. When this solution isn’t available, the father may be forced to hire childcare, which can further stretch the available income and resources.
Charles, who was living in Los Angeles, moved to Atlanta to be closer to family. He moved in with his mother and she helped him take care of her grandsons. But the challenges involved with raising two young sons alone were evident almost immediately. “I had a days-old newborn and an 18-month-old who was missing his mother terribly and didn’t want me out of his sight. My older son would wake up in the middle of the night because he missed his mommy and his cries would wake up the baby and the baby’s cries would wake my older son back up and it just went back and forth like that for a few nights. But I was hell-bent on doing everything myself. It was a way to keep me busy and help with my grief,” said Charles. After a few nights like this, he reached out to MomsOnCall, a consulting organization for new parents, and was put in touch with the owner. “She met with me and showed me the steps I could take to raise my sons on my own,” continued Charles. “She showed me how to raise Langston so that he could sleep through the night on his own at three months old and that saved my life. I had been through [raising a newborn] recently but doing it by yourself is a whole different ballgame-particularly with two little ones.”
Not all families are able to move across the country to be closer to people who can help them raise their children, and family fragmentation is common following maternal mortality. When the family loses a breadwinner and resources become stretched, a family may decide the best course of action is to have the children live with other relatives. In addition to the older children, this can include the newborn being raised by grandparents or other second-degree relatives.
Maternal mortality among African-American mothers can have a significant impact on the surviving family due in large part to family structures. According to 2015 research from the Pew Research Center, the majority of white, Hispanic, and Asian children were living in two-parent households, while only 31% of African-American children were living with two married parents, with more than half (54%) living in single-parent households. In 2015, 71% of African-American women gave birth outside of marriage, compared to 29% of non-marital births among white women.4 Additionally, according to a 2014 report from the United States Department of Labor, among mothers with children younger than 18, African-American mothers are the most likely to be in the work force (75.4%), with 74% of African-American mothers considered to be the primary breadwinners of their families.5 Not only are these mothers more at risk, but if tragedy does strike, their surviving immediate family members lose their primary breadwinner and often lack the support system within the family structure to adapt.
The family can also be affected by potential family or household economic costs associated with maternal illness and death. Among these are changes in labor allocation, productivity, consumption, and investment, as well as direct costs, such as medical or funeral expenditures.5
One more issue to consider is that while 92 countries offer paternity leave, the United States does not, and only a few states and cities have passed family leave and paternity leave laws.6 While more companies are beginning to offer paternity leave, the only legal protection for fathers comes from the 1993 Family and Medical Leave Act (FMLA), which allows new parents to take up to 12 weeks of unpaid leave without the threat of job loss. But the FMLA covers only employees who have worked 1,240 hours over 12 months at a company that employs more than 50 people; small business employees and part-time workers are not covered. And even if a father qualifies for FMLA paternity leave, he may not be able to afford it, given all the additional expenses that come with raising a newborn plus the direct costs resulting from the mother’s death.
Wake up and make Mommy proud. Repeat.
As his children have grown older and become more inquisitive, Charles has had to answer questions about what their mother was like and what happened to her. He has taken the approach of trying to be open with his children and, while it can be difficult, his hope is that they’ll develop an image in their minds of who their mother was, rather than growing up with more questions than answers. Photographs of Kira hang on the walls throughout their home and he has tried to make sure that his sons feel comfortable to ask him questions about their mother. “Kira’s presence is very much in everything that we do. I never want the topic of Mommy to be off-limits or taboo with my sons,” he says.
Charles also started a foundation, 4Kira4Moms, in honor of his late wife. The foundation has a strong focus on getting legislation passed to help reduce maternal mortality, specifically H.R. 1318 and S.B. 1112, two bills that call for maternal mortality review committees in all 50 states. The foundation also provides resources for families through financial support, counseling, parenting materials and also aids families that are facing high-risk pregnancies by assisting them with additional birthing services, such as doulas and financial assistance for seeing specialists.
While Charles and his foundation have done much work, expectant fathers can also take proactive steps on their own to help solve the maternal mortality crisis. This includes being present, being supportive and being an advocate. Charles urged, “Listen to your wife or your partner. A woman knows her body and if something isn’t right. A lot of these women simply aren’t being listened to and it’s our responsibility as a partner to advocate on her behalf.”
For Charles, the biggest thing that needs to change is turning what are now policies into mandates. “Groups like the Alliance for Innovation on Maternal Health (AIM) have these wonderful toolkits and bundles on postpartum care and hemorrhage,” explained Charles. “But even in California, a state that has been a poster child for implementing these strategies and has seen a tremendous decrease in maternal mortality rates, no one paid any attention to those resources in Kira’s case because it was a suggestion and a tool rather than a mandate. If you have a tool, what good is it if no one is using it?” He also believes that developing consistent standards of care can help cut through some of the other troubling factors intertwined with the maternal mortality crisis, such as implicit bias and racial and class discrimination.
Following Kira’s death, Charles has developed a mantra for himself and his sons: “Wake up and make Mommy proud. Repeat.” For him, that is just one way of keeping Kira’s memory alive and raising his sons the right way. But while the mantra is simple, life and young children are complex and not every day is easy or straightforward. “While the statistics associated with the maternal mortality crisis are devastating, there’s no statistic that can quantify what it’s like to tell an 18-month-old that his mommy is not coming home or quantify what it’s like to try and explain to a son that has never known his mom just how amazing she was. We still deal with that,” says Charles.
Charles hopes that his and Kira’s story will remind physicians to treat patients with respect and do everything in their power to ensure their patients’ safety because, while the physician’s time with the patient often ends at discharge, the family must live with the consequences of their physician’s actions. “If you’re an ob/gyn, remember that these women are not statistics. They are precious mothers who are trusting you with their precious gifts. The reality of the situation is that training, legislation, resources, is not ultimately what is going to turn this around. It is you.”