Kyisha Williams is trying to focus both on breathing and footwork, as the lyrics to Destra’s Lucy waft through the dimly lit room. Williams sways from side to side in time with the music. But this isn’t a dance class or a performance rehearsal, it’s early afternoon at a birth centre in Toronto. Williams has been in labour for two days, in active labour for the past six hours. Williams’ doula, Giselle Johnston, had showed up that morning armed with a playlist of dancehall and reggaeton tunes to keep Williams’ spirits up. “We were whining and going down low,” Williams says. “It was so comforting and productive to be dancing during labour.”
Williams (who is single, queer and uses the pronoun they), has always known that when it came time to give birth, they would try to do it their way. For instance, Williams had a number of practices from Ifa (a traditional West African spirituality) to incorporate to make the birthing experience as meaningful as possible.
But when it comes to delivering babies, things don’t often go to plan. And as Williams was about to realize, you’re far more likely to experience complications if you happen to be Black.
After a few hours at the birth centre, the labour wasn’t progressing as hoped, and the midwife decided it was time to head to the hospital. When Williams, the doula and the midwife arrived, staff prescribed oxytocin to speed up labour. The medication didn’t have the intended effect, and Williams was told Ceasarean section was the only option—something Williams had been determined to avoid. “At that time, I felt like that’s what was coming,” Williams said. “It just wasn’t happening vaginally.” Then, the anaesthesiologist punctured Williams’ spine while administering the epidural. Medical staff continued with the c-section and Williams was told the injury would probably be okay. It wasn’t.
There have always been large disparities in maternal outcomes for Black people compared to white. Last May, a study from the Center for Disease Control in the United States found that Black women have the highest pregnancy-related deaths of any demographic—sitting at a rate three times higher than that of white women. Further research in the U.S. shows that Black, Hispanic and Asian people are far more likely to experience adverse outcomes during labour than white people. Of the more than 115,000 women surveyed in that research, 3 percent of Black women were found to experience postpartum haemorrhage compared to the 1.6 percent observed among white women. Systemic barriers like poverty, unemployment and discrimination also mean that Black women face an uneven playing field when it comes to their physical and mental health—including of course, the experience of pregnancy.
Here in Canada, we like to pride ourselves on our health-care system. But the truth is, we don’t know how that system treats Black people, or any Canadians of colour for that matter. There is a dearth of race-based data within our public institutions, an issue that stems in part from a general hesitancy to talk about race and racism in this country. That, combined with a devotion to protecting personal privacy among statistical authorities, means that there are major knowledge gaps that make it tough to properly assess the problem. We don’t collect enough data to properly identify troubling gaps in care.
This lack of data is something Toronto family doctor and public health specialist Onye Nnorom sees in her work day to day. “Overall, when it comes to data based on race, there is very little and oftentimes no data that we can pull,” she says. Race data is now collected on prenatal appointment forms, she noted, but is not aggregated or analyzed. “Right now, we’re all working blind.”
Nnorom said this lack of data leads to disparities in care that she’s heard a lot about both from patients and other medical professionals. She worked for a number of years at TAIBU, a community health centre with a mandate to serve Toronto’s Black community, where many patients shared negative experiences in the health-care system, whether it was in the prenatal or birthing process. “People described being stereotyped, being questioned about their degree of pain, not being believed about their health history,” she says. “It’s a pattern.”
And these experiences are mirrored in what little data does exist. A 2015 study conducted by researchers at McGill University, for instance, found that 8.9 percent of infants born in Canada to Black parents were born pre-term, compared to 5.9 per cent of white babies. That research concluded that relative disparities in preterm births between Black women and white women were similar in magnitude to rates seen in the US. In all cases of the research that has been done in Canada the conclusion is the same—Black people are suffering far more adverse outcomes giving birth than white people.
“Systemic racism drives socio-economic differences, which really do affect the next generation. And those things both work independently, and they overlap,” Nnorom says. “Poverty is in itself a risk factor for pre-term birth, but racism has so many layers of stress that also affect poor birth outcomes.”
After the delivery, Williams was in excruciating pain: “I had the worst headache I’d ever had in my life.” The puncture had caused a spinal fluid leak and Williams would need another procedure after the birth to repair it.
“I didn’t feel like they took my pain very seriously,” Williams says. To deal with the spinal fluid leak, medical staff said Williams could either wait a few weeks for it to correct itself or undergo a procedure to patch it up. Williams feared having yet another surgery, but knew the pain would be too overwhelming to take care of a newborn alone. So, Williams opted to get the patch done. “I couldn’t sit up, I couldn’t easily breastfeed. It was very difficult,” they say.
It was a few days before the blood patch was performed. “I had to really advocate for myself, which is hard to do when you’re healing.” Though successful in making small requests—asking to move beds to be closer to a window, for example—Williams couldn’t shake the feeling that both their pain and the anxieties were largely disregarded. “When the puncture happened, there wasn’t a lot of care put into that interaction. They just didn’t take responsibility at all.”
Even during the delivery, Williams says, little was done to mitigate pain. “They’d say things like, ‘Let us know if the pain becomes unmanageable.” And so, Williams would call, tell them that the pain was unmanageable and describe it. Each time, the answer was the same. “They’d either say, ‘Oh, we can’t really do anything right now, because you’re not within your window of taking more meds,’ or they would just say again, ‘Let us know when the pain gets unmanageable.’”
Pain management is one of the clearest examples of the differences in care. This issue goes back, in large part, to anti-Black prejudices that exist throughout the medical system and even its academic institutions. A 2015 study conducted at the University of Virginia, for example, found that nearly half of white medical students surveyed overestimated Black people’s pain tolerance, and as such made less accurate treatment recommendations in at least 15 per cent of cases. According to the study, these students and residents held beliefs about biological differences between Black and white people, “many of which [were] false and fantastical in nature, and these false beliefs are related to racial bias in pain perception.”
Again, we don’t have nearly as clear a picture of what this looks like here in Canada, a fact that even the United Nations has noted. In the community, this lack of data proves a problem for advocates like Elsie Amoako, founder of Mommy Monitor, an organization dedicated to providing culturally relevant maternal health care services. Amoako says that she and others who work with racialized communities have their hands tied when it comes to influencing policy changes. “We can’t do anything because we can’t prove to anybody that there’s a problem.”
This lack of data also informs the way that many pregnant people form expectations about the process. “They don’t think that birth can be good,” Amoako says. “And because of that, they’re okay with their experience, regardless of how bad it is.”
Many Black people are finding support, education and advocates by hiring doulas. Odessa Thornhill, a Toronto-based birth and postpartum companion and registered naturopath therapist makes it a point to arm her clients with everything they need to know when speaking to their primary caregiver. “If you have that kind of confidence, you feel empowered, then you’re able to navigate your appointments with them with more ease and care,” she says.
Thornhill also works with clients who are not yet pregnant but are considering it, preparing them physically, mentally and spiritually. “There’s a lot of trauma that needs to be brought to the forefront,” she says. Here, Thornhill is referring to a history of transgenerational trauma that exists in Black communities and families. This trauma spans larger systemic issues like legacies of slavery, police brutality and institutionalized racism, to problems like acute poverty, domestic violence and teen pregnancy. She also works with clients to become more comfortable with their bodies. “Learning how to breathe deeply, how to stretch slowly and connect to your fetus, helps you to feel confident in your physical body,” she says.
Giselle Johnston, Williams’s doula, will usually explore all the options for hands-on physical and emotional support during labour, including things the client wants to incorporate into their birthing plan. This could range anywhere from a gentle massage, to hydrotherapy, and like in Williams’ case, dancing, or movement that is conducive to fetal positioning.
And, the nuance and specificity of care becomes even more critical when it comes to Black transgender or non-binary people, many of whom experience homophobia and transphobia within healthcare systems. These experiences can range from inappropriate comments about physicality to forced transvaginal exams. “Through my own personal experience, I know how hard it can be to find a care provider who you feel safe with,” Johnston says.
Williams also felt it was also particularly important to have a queer person who was Black as their doula. “I wanted someone who would get where I was coming from in terms of my social location and how that would affect labour,” they say. “Especially because I was going into this process as a single person, I thought it was especially important to have someone be there for me primarily.”
And as Johnston explains, giving birth can be extremely traumatic for pregnant people who do not feel safe because their bodies are not being respected, validated or well cared for by medical professionals. This might be shown through language, physical touch and confidentiality.
That is why as many parents agree, having a doula is extremely important, especially having someone by your side who you identify with. But there’s a perception, particularly in Black communities, that doula services are something of a luxury, reserved for people of certain socio-economic status or race. (Rates for doula services range between $1,500 to $3,000.) And that was the same perception that Toronto-based Melody Adjei had prior to her first pregnancy, until she started to work with one herself. “It was helpful being able to be very frank or not worry about code switching, or mincing your words,” Adjei says of the experience.
Feeling overwhelmed at the end of her first trimester, she met with a doula, who was able to answer all her questions and give her guidance that fit her cultural needs. “You can just really be open with them,” she says. “I didn’t have to worry about how I was coming across—she just got it.”
To open up the discussion about the challenges of giving birth, Amoaoko’s Mommy Monitor facilitates an annual racialized maternal health conference that brings together healthcare professionals, advocates and community stakeholders. It’s a space for people to have their stories heard, their experiences validated and for them to hear about the many grassroots programs set up specifically to help people like them through the birthing process. Mostly, it’s all about learning. “We have to come together to help ourselves find solutions,” Amoaoko says.
Ultimately, this path to total healing is what all doulas aspire to for their clients. Thornhill, for example, says it’s important that her clients have the tools to continue to carry out the care and advocacy that she provides, on their own. “My job is not necessarily to make you pay to come back and see me,” she says. “My job is to empower you.”