‘I couldn’t believe this act of kindness’: how Black women trying to get pregnant create their own healthcare networks
For many Black women in the US, infertility has a complicated duality. The inability to conceive is often invisible, pushed out of view by shame, the racist notion that Black women are hyperfertile, or the idea that such struggles should remain private. Yet for people aspiring to parenthood amid fertility problems, getting the family they want often requires complete transparency about their condition.
Community support is particularly critical for Black women, who face a slew of health disparities in fertility medicine. They’re much less likely to be referred by doctors for fertility treatment – perhaps due to the myth Black women get pregnant with ease – even though studies suggest that they experience infertility at a rate twice as high as white women.
Black women are also less likely than white women to have insurance. Even if they do, full coverage for procedures such as in vitro fertilization (IVF), in which a harvested egg is united with sperm outside the body and later implanted, or intrauterine insemination (IUI), where sperm gets a fast-track injection into the uterus, is rare.
One round of IVF can cost upwards of $10,000, and the medications, which people usually have to pay for out of pocket, are also expensive, placing the treatment far out of reach for many lower- and middle-income people. For the Black women who can afford assisted reproductive technology (ART) and this highly specialized care, if they also need donor sperm, they have to contend with the fact that Black men comprise just a small fraction of US sperm donors.
Faced with these barriers, Black women often turn to mutual aid to navigate the medical system and infertility’s emotional, financial and bodily tolls. The sharing of resources: information, medications, money and even donated biological material such as sperm, eggs and embryos is a key component of these groups.
Venues for connection include professional settings, support and prayer circles, and online forums on platforms such as Facebook, where women trade notes about finding the right doctor, the hormonal side effects of fertility treatments, and rituals like eating french fries and other high-fat foods after embryo implantation. These outlets offer support that many Black women say they rarely receive in clinical settings, which can feel almost impossibly technical, transactional and implicitly or overtly racist.
‘I couldn’t believe this act of kindness’
This past summer, Kailey Townsend called her co-worker Jamila Galloway with a generous offer: she wanted to give her an egg, one of many she’d retrieved and stored for future use. Because Townsend has endometriosis, a condition in which the uterine lining grows outside the organ, and a bleeding disorder related to hemophilia, she decided to act when she had an abundant supply of youthful eggs in case her conditions worsened later. The 27-yearold’s egg freezing procedure yielded more than she’d ever need.
Townsend, a social media director based in Connecticut, and Galloway, a communications executive in Washington DC, work at a company where fertility treatments are covered by insurance and people openly discuss their own wellbeing and health. That’s why Townsend, who is also a certified doula, knew that Galloway had been trying to conceive through multiple methods, including using ART.
“I literally bawled like a baby,” Galloway said of receiving the call from Townsend. “I couldn’t believe this act of kindness, mainly because many women freeze their eggs, but they don’t do anything with them.” A review of studies about egg freezing outcomes found that only about 16% of women return to use them. “I understand it’s very personal,” Galloway continued. “It’s a piece of your DNA.”
After two miscarriages and several unsuccessful attempts to get pregnant through IVF and IUI over the last three years, Galloway’s supply of sperm and her own eggs have dwindled. Her procedures were done with sperm she’d bought from a cryobank, sometimes costing her up to $1,700 per vial(estimates vary about how many vials are needed per insemination, but it’s often at least two). “There’s not a lot of Black sperm donors,” so their stock is coveted and sometimes sells out, said Galloway, who is 41. “And there’s obviously not a lot of Black egg donors. I’ve had a couple of associates who were on the list for about a year to wait and receive one.” She’s carefully considering Townsend’s offer.
For Townsend, offering this part of herself to Galloway was uncomplicated. Her brother had donated sperm to someone, and her family and partner approved. Townsend said that giving an egg to Galloway fits within her expansive notion of family and African American tradition. “There is something really important about Black community and how we’ve always raised each other that has been essential to my being. And I think that’s why it comes very simple to me. I think about my aunts and my people who aren’t even related to me also being mother figures who I call ‘mama’. This is just the 2023 version of what our ancestors have been doing all along.”
One hundred-mile drives and clinic stakeouts
Even though stories like Townsend and Galloway’s probably aren’t as rare as one may think, the more common swaps between Black women are for information and research. DánaAin Davis, a medical anthropologist and professor at the City of New York Graduate Center, said she’s observed what she calls acts of “racial reconnaissance”, in which Black women go to extreme and tiresome lengths to mitigate the effects of inadequate healthcare, such as scoping out fertility clinics for red flags.
“The amount of time that they spent trying to find clinics that would not be racist, that would provide them with information, that would treat them with respect, was unbelievable,” said Davis, who is also a doula who accompanies clients throughout their reproductive journeys. She remembered a woman “who drove within a 100-mile radius of her house and visited all the clinics, and she’d sit outside at different times and see if any Black people walked in”.
What many Black infertility patients are looking for is that proverbial needle in the haystack: a Black specialist. And social media and other online resources can offer intel on clinic demographics, atmosphere or providers to try or avoid. “There is a lot of self-advocacy where they’re specifically trying to obtain racial and gender concordance with their providers,” said Isabel Morgan, a University of North Carolina public health doctoral student studying Black women and infertility.
That racial concordance – when provider and patient share the same background – contributes to better health outcomes is a fact in many corners of US medicine; for example, Black children’s risk of dying in infancy drops by half when they are cared for by a Black doctor. Davis noted data that suggests that for many women who are able to secure a Black provider, “the process improves. They get the treatment that they need. They might not necessarily get to the live birth, but they might get pregnant. They might start ovulating” when they hadn’t before.
Independent networks also provide spaces for women to ask medical questions from others going through the same process: Do you like a certain injector for your shot? Did your doctor tell you to lose weight? Did you cramp after embryo implantation? In some online spaces, Black women have developed relationships with “retrieval sisters” or “transfer buddies” who are undergoing egg harvesting on the same day or around the same time.
Because of their reach, online sites tend to double as a marketplace for fertility drugs. Women frequently give, swap or sell their surplus medications, including the daily shots that spark ovulation. “You might buy more than you need or be given more than you need,” said Morgan. “You might have some left over” due to a successful pregnancy, a failed IVF cycle or a decision to cease treatment. “So you might donate it to someone or you might sell it. There’s sort of a black market for it because of how expensive it is. If insurance companies are covering IVF, typically they’re not covering the medication. You have to pay for that out of pocket.”
Some Black women – none of whom would speak to Guardian US on the record about medication sharing, which is technically illegal – said they’d prefer to share meds with another Black woman, knowing as they do how Black and lower-income people are often priced out of fertility treatment. And the same goes for the trade in donated sperm, eggs or embryos; since there’s a very limited menu of Black donor sperm or other biological matter available at traditional banks, Black donors often want to contribute to making Black families possible.
Crowdfunding a baby
The prohibitive costs of IVF treatment have given rise to crowdfunding campaigns that raise money for individuals’ procedures. Ebony PierreLouis, a 40-year-old early-education specialist based in Woodside, New York, recently launched a GoFundMe to raise money for egg donation and IVF. She had elective bariatric weightloss surgery; though she made that decision herself, many fertility doctors recommend weight loss pre-pregnancy. She will also undergo fibroid removal.
Pierre-Louis and her husband of two years had been trying to get pregnant before she was diagnosed with primary ovarian insufficiency (POI), which can reduce egg supply and bring on premature menopause. She wants to carry her own pregnancy and worries her time is running out. But money – an estimated $30,000 for both an egg donor and Pierre-Louis’ medication – is the couple’s biggest barrier.
Taking her case to the internet and asking strangers for money wasn’t easy. She’d suffered depression and suicidal thoughts when she couldn’t get pregnant, but she’s working through those issues with a therapist. Then, the couple faced blowback from relatives, some of whom asked: “‘Why are you putting people in your business? Why are you begging for money? We can do this on our own.’ It was kind of an embarrassment thing”, said PierreLouis. Still, their desire for children outweighed the criticism. So her husband took a second job, but the couple knows they can’t do it alone. Friends have been behind them, however, running the campaign and donating.
Providing financial support has been a large component of the work of Fertility for Colored Girls, one of the most active reproductive organizations for Black women. The Rev Dr Stacey Edwards-Dunn, a former sexuality education instructor and ordained minister who pastors a church in Chicago, founded the group partly because of her own journey with ART once she learned she had an abnormally shaped uterus with only one fallopian tube.
After three unsuccessful IVF rounds in the US and Barbados, Edwards-Dunn, who is 53, noticed that parishioners were increasingly talking about infertility in pastoral counseling. Couples passed through Edwards-Dunn’s sessions, not knowing that she was going through the same thing. She and her husband had “spent over $100,000 and we still had no baby”, she said. Edwards-Dunn organized a community event in 2013that attracted 100 people who were hungry for the discussion. “Two of the hardest conversations in church, and particularly the Black church, have always been around human sexuality and money,” she said.
That meeting evolved into Fertility for Colored Girls, a group that has more than 8,300 members on Facebook,
chapters in 16 US states and support groups nationwide, including a weekly prayer circle and workshops that introduce women to Black endocrinologists.
She knew that facilitating emotional support was important, but financial support was necessary. So Fertility for Colored Girls created an array of grants: one of the largest provides $50,000 worth of services at the co-sponsoring KindBody fertility clinic chain in select markets. That’s a drop in the bucket for many patients – especially if they need repeat treatments – but it can reduce the chaos of searching for medically sound, compassionate advice and care.
Edwards-Dunn eventually gave birth to three healthy babies, including a set of twins at age 50. But before she and others founded fertility groups just for Black women, “we had nowhere to go talk about our unique experiences as women of African descent who were experiencing infertility, whether it was the treatment and services that were being provided, our experiences in our homes or in our communities.” Support is crucial because stress may affect conception. And, as she noted, there are fewer things more stressful than a lack of options and navigating infertility in a vacuum.
Fertility doulas and the tradition of Black communal care
Networks of community-based care for Black women have deep roots. And as more Black women, people and families explore fertility treatment and ART, many are guided by birth workers who draw from historical traditions. Michelle Drew, a 53-year-old professional nurse-midwife from Wilmington, Delaware, followed her grandmother and great-grandmother into midwifery. She noted how they tended to women of reproductive age in rural Hopewell, Virginia, from the 1950s to the 1970s.
“If Granny had somebody who’d had several stillbirths or who’d had preterm births, she would give them wild yam,” Drew said. The vegetable contains a natural estrogen that can be converted into the synthetic hormone, though there’s no medical evidence to suggest it is an effective fertility drug in its unaltered state. “If she wanted to ‘hold the baby in’”, she’d mix a tincture of botanicals.
Part of Drew’s grandmother’s prescription was for the woman’s neighbors, friends and family; the community had its own job, to lighten the pregnant person’s load. She’d recommend that pregnant women abstain from sex and heavy labor. And in farming communities, where Black women often did back-breaking agricultural labor or domestic work at home or in white people’s houses, other women or neighbors might pick up her slack and do her chores so she could rest and create optimal conditions for a healthy birth.
Hospitals were few in the rural US and even less accessible for Black patients, and much of the country – Black or white – was delivered by midwives, until they were maligned as superstitious and dangerous vectors of infection by modern doctors, who rapidly took over their business. As the country moved away from traditional birth attendants and to institutionalized healthcare, the notion of communitybased care gradually deteriorated.
Today’s doulas are trying to bring it back. They are the modern successors of midwives like Drew’s forebears, who “caught” or delivered babies. Davis, the medical anthropologist and doula, helped her fellow academic, LeConté Dill, a professor and poet, through fertility appointments and taught her how to focus her energy in culturally meaningful ways. Davis encouraged her to develop a spiritual birth-centered practice that reduced her stress: asking friends to send her energy on important days, making offerings of honey to an Afro-diasporic goddess, meditating. Davis’s warmth and care beyond the medical helped steer Dill through a lonely and isolating process.
Birth workers are also creating pathways for Black people to learn about infertility. Sierra Bizzell, a 38-year-old doula and nursing student, determined her career as a result of her own experience. A caesarean section scarred her fallopian tubes and during surgery to address the damage, her surgeon told her husband that she’d be at great risk for an ectopic pregnancy if they didn’t fully remove them. She awoke to the news that “you have no tubes and you’re 30.”
From her home in North Carolina, Bizzell runs Ultimate Fertility Consulting and Faithfully Fertile Foundation. She helps individuals navigate the hyper-specialized world of infertility care, which is dominated by an acronym soup of procedures and medications. She also trains healthcare providers such as midwives and birth workers to better steward their patients through options including IVF.
When her Black clients see her, they tend to inundate her with questions, which they say physicians often just won’t answer. She characterizes herself as a recovering hippie who used to rely on herbs and all-natural everything. Now she tries to balance the natural with the scientifically proven, checking to see if this tea might elevate someone’s blood pressure and helping people figure out what questions to ask about their hormone numbers.
“I’m like: ‘I’m not the doctor. But I can try to make sure that I connect you with this person and connect you with that person. I’m having to give out community resources to people in the hospital because they don’t trust anybody in there. We have so many years of trauma that caused us to feel the way we feel about the medical system, and rightfully so, because history tells us that they do terrible things to our bodies. But we’re sometimes in a position where we need them and where we need to be able to trust somebody.”
In the absence of trust in the medical establishment, many Black individuals and communities are providing for each other through words of advice, doctor referrals and giving the gift of literal life. Galloway, the communications executive, said that the more she’s shared about her infertility journey, “the more people want to help”. And she’s now realized that there are diverse and beautiful ways to become a mother, parent or family. She’s in the middle of an IVF cycle, and will know if she’s pregnant by year’s end. If not, she will pursue parenthood by adoption or some other means.