When Dr. K.C. Burlison decided to build a family with her husband, she never expected her journey to become a mother would be a years-long, emotionally, physically, and financially draining process. Burlison, a college professor in the St. Louis metro area, was diagnosed with uterine fibroids in 2006 and had surgery to remove them. Around the time she got married in 2011, she was rushed to see a doctor after months of having extremely painful periods.
“It was at the point where I was sitting on the floor, and my grandmother—who is this itty bitty thing—had to lift me off the ground,” Burlison said. “I couldn’t lift myself up.”
During an ultrasound to diagnose the problem, Burlison said the expression on the ultrasound tech’s face had her concerned.
“I could see her face and she was like, ‘Wow. This is a lot,’” Burlison said. “But she didn’t say anything because she wasn’t allowed.”
After the ultrasound, the OB-GYN looked over the tech’s notes. He told Burlison that she and her husband may need to put in a bit more effort to conceive a child, but didn’t appear concerned about their chances. A few days after the office visit, a nurse called her.
“She asked me, ‘Do you want to have children?’ and I said, ‘Yeah, for sure.’ She said, ‘Well, then you need to go see a fertility doctor,’” Burlison said. “I said, ‘Well, the doctor didn’t seem really alarmed,’ and she was like, ‘Honey, if you ever want to have children, you should have seen a fertility doctor like, two years ago.’”
Burlison is one of the 12% of women in the U.S. every year who struggle with infertility, which is generally defined as having unprotected intercourse for at least one year without conceiving. Despite being stereotyped as “hyper-fertile,” Black women are two times more likely to experience infertility than white women, but only half as likely to reach out for support. For Black women who do seek help, their chances of a successful pregnancy are lower. A 2000 study found that Black women required significantly more aggressive hormone stimulation than white women, and that the disparities in in vitro fertilization (IVF) outcomes were partly due to a higher body mass index, longer duration of infertility, and higher incidence of tubal-factor infertility. Burlison, however, reached out right away when she learned there would be challenges.
Through a reference, Burlison learned of a reproductive endocrinologist in her area who had a positive reputation with women of color and other people from marginalized communities. The doctor openly addressed the racial disparities in infertility treatment and offered more affordable options for patients.
“For the first time, I felt like someone was listening to me—really listening to me—and being proactive,” she said. “Oftentimes, I feel like Black women are not heard when it comes to medical issues.”
Burlison’s experience is a common one. Black women are less likely to have their pain and symptoms investigated; they’re also up to four times more likely to die from pregnancy-related complications and suffer from childbirth-related disabilities compared to white women.
Shortly after Burlison began her journey to motherhood, she underwent another surgical procedure to remove her fibroids, some of which turned out to be “the size of a softball.”
“I never would have gotten pregnant on my own—ever,” Burlison said. “For a doctor to be so cavalier about it and to have told me just a couple months before that there was still a chance [to conceive] and act like I had a choice … That was just me believing the medical opinion of a doctor. I just took his word for it.”
While the surgery was successful in removing the fibroids, it ended up blocking one of Burlison’s fallopian tubes. Due to the blocked tube, the only path forward was IVF. Burlison had two failed IVF cycles before becoming pregnant on her third attempt in 2016. Then, 17 weeks into her pregnancy, she miscarried. After her fourth IVF cycle failed, Burlison decided to move forward with a surrogate, but after some encouragement from loved ones, she tried IVF for a fifth time. That’s when she became pregnant with twins.
“I was over the moon,” she said. “I just couldn’t believe it was happening.”
Several weeks after learning the exciting news, Burlison discovered one of the babies didn’t have a heartbeat. The other baby’s heartbeat was still strong however, and she gave birth to a healthy baby boy in August 2017.
“Miracles are possible,” Burlison said. “There’s no way I should have ever had a child.”
Now, a little more than three years after giving birth to her son, Burlison is one of the many people speaking out to try to destigmatize infertility for Black women.
“In my family, and I think in a lot of Black families, there’s always that aunt who doesn’t have any kids and nobody really knows why,” Burlison said. “White women openly talk about [infertility], but it’s not something Black women really discuss. The more it’s talked about, the more it’ll be normalized.”
Out of reach costs
Burlison and her husband were able to scrounge up enough money for IVF through savings and assistance from friends and family, but for people with a lower income and fewer resources, the process is out of reach. One cycle of IVF can cost up to $25,000—a major financial barrier preventing people from starting or growing their families. Burlison said that by the time she gave birth to her son, she and her husband had spent roughly $70,000 out of pocket. Some nonprofits like the Tinina Q. Cade Foundation offer grants of up to $10,000 to assist couples with their journey to parenthood. People of all ethnicities are encouraged to apply for grants, but only a small percentage of applicants received by the Tinina Q. Cade Foundation are from Black couples. Despite the low number, the organization has seen a slight uptick in the number of applications by people of color in recent years. Interestingly, however, they’re not the ones who ask for the most financial help.
“People who have money are more likely to ask for the maximum amount of grant support,” said Dr. Camille Hammond, CEO of the Tinina Q. Cade Foundation. “I definitely have seen a difference in the way that people who have a lot of money approach the application versus those who have more meager means.”
Hammond and her husband started the Tinina Q. Cade Foundation in 2005 after a five-year struggle with infertility and six failed IVF procedures due to endometriosis.
“It felt like my body was betraying me,” Hammond said.
Eventually, her mother stepped in as a surrogate and delivered Hammond’s triplets, which Hammond refers to as her “miracle babies.” A lot of time has passed since then, and Hammond says she has been encouraged by the number of supportive organizations for Black and brown women that have been founded. Even with more opportunities for support however, she acknowledges that much more needs to be done to knock down the barriers keeping many Black women ashamed of their infertility and suffering in silence.
“There’s a lack of understanding about what infertility is and what it isn’t,” said Hammond. “What it is is medical. What it’s not is a punishment from God.”
In addition to grants, the Tinina Q. Cade Foundation also provides infertility education and resources. Hammond says a lack of information is still one of the biggest barriers keeping women of color from seeking infertility help. She cautions people from trying to get infertility support from people who are unfamiliar with the process.
“Many African Americans look to their faith community for support and for information when they struggle with infertility,” Hammond said. “In our faith communities, there’s still less knowledge and less acceptance of infertility, so sometimes when people turn to their faith community, their church, their pastor, or wherever—if the person who is providing leadership doesn’t know about infertility, they may get bad advice. For instance, to tell a woman who’s 33 years old who has been married for eight to 10 years trying to conceive, ‘You just need to pray and wait on the Lord,’ I would consider that bad advice. It’s a medical issue. Your uterus is supposed to conceive.”
Black women speak out
In recent years, more high-profile Black women have been revealing their personal struggles with IVF, infertility, and miscarriage to help eliminate the shame around it. Michelle Obama, Gabrielle Union, and Meghan Markle are just a few of the Black women who have made public attempts to get rid of the stigma associated with infertility and miscarriage. Evette Dionne, the editor-in-chief of Bitch Media, an online feminist website, is another Black woman who has been documenting her health experiences on social media. Dionne was diagnosed with fibroids in 2015. The medications she was on for fibroids eventually led to left ventricular heart failure and pulmonary hypertension—two progressive chronic conditions. Dionne learned that one of the medications she would need to take would cause severe birth defects and that no doctor would allow her to become pregnant while she was taking it. She knew that if she ever wanted to become a parent, she needed to act quickly and move forward with harvesting and freezing her eggs.
“I really wanted to use my own personal experience to help raise awareness about what this process is like, because when I started researching and I didn’t have a whole lot of time, there was just nothing,” Dionne said. “The best advice I received was from other people who had gone through the process who emailed me out of the blue or DM’d me. [Without them,] I would have had no idea about all of the hidden costs of it and all of the pain you end up being in.”
In addition to the expensive costs, the IVF process is also extremely time consuming, at some points requiring women to attend doctor’s appointments several times a week at all hours of the day on little notice. For people with jobs that don’t offer a flexible schedule, it can be impossible to do. The pandemic has made receiving treatment even more challenging. In spring 2020, roughly half of infertility treatment centers around the U.S. closed for an extended period, forcing many women to delay treatment during an already tedious, emotional, and time-sensitive process. Studies have shown the pandemic has had an additional psychological impact on infertility patients, elevating their anxiety over future plans.
In November 2020, Dionne began the process to harvest and freeze her eggs. She recently underwent an egg retrieval procedure and plans to use a surrogate to deliver a child for her sometime next year. She says that while many people have been encouraging of her choice to use a surrogate, not everyone has been sympathetic.
“I’ve had people in my family who have not been the most supportive, who have that belief that if you can’t produce children naturally that you’re just not meant to be a parent,” she said. “I’ve definitely come up against that, and I think it’s because so many of us don’t know a person who has gone through this experience because it is so expensive and it’s so taxing and it’s time consuming—you’re at the doctor every other day. The kind of person who can afford to do that is few and far between … It’s just not a common experience, so people just have a lot of misconceptions about it, which is another reason why I’ve been very public.”
As a single Black woman who has had a “complicated” relationship with doctors in the past, Dionne was well aware that she would need to advocate for herself at every step in the process in order to avoid being profiled.
“I go into these situations expecting to come up against a lot of resistance,” she said.
Thankfully, Dionne said her experience so far has been a positive one, but she believes much of that has to do with socio-economic class.
“When I was going to see my fertility doctor, everyone that I encountered typically was a white person, like a 30 to 35-year-old white person, typically with an affluent partner,” Dionne said. “The level of care that they believe you deserve when you are spending as much as it costs to go through the IVF process—it’s almost as if they feel that you deserve a higher level of care than if you are on Medicaid or if it has to be funded by someone else.”
For Black women out there who are suffering in silence and feel hesitant to seek treatment for infertility, Dionne has some advice: Start the process as early as possible.
“I want people to know that it’s never too early to start thinking about it, and it’s okay to decide that you want to create your family through this method, as opposed to whatever people think is ‘natural.’” Dionne said. “I didn’t expect to be 31 and have two progressive chronic illnesses and need to do this really quickly. I wish it was something I thought about two years ago. It did damage to my savings account, so I wish I would have had the time to really prepare for this possibility.”
