When Ashley discovered she was pregnant with her first child, the Hartford County resident wasn't sure who to turn to. As a Black woman who’s over 35, she’s well aware of the childbirth statistics for women of color and they scared her.
Nationally, Black women are three times more likely to die from pregnancy-related complications than white women, according to the Centers for Disease Control. The higher risk spans all income and education levels.
Ashley was looking for resources, education and overall encouragement, especially as she and her partner Oliver started seeing medical professionals. (The couple requested to use their first names only to protect their medical privacy.) A friend recommended Lucinda's House, a nonprofit that addresses maternal mortality among Black women through preventative and postpartum consultation, including one-on-ones, support groups for families and educational events. Ashley said that in the short time she's worked with the nonprofit, its founder, Lucinda Canty, who has a doctorate in nursing, has become one of her biggest supporters and a listening ear.
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"I needed someone that would talk to me as a human and not just as a statistic," Ashley said. "She talks to me, particularly, and us, as humans and not as high-risk or flawed subjects. That has been invaluable to me."
Maternal health disparities have recently received a lot of attention, but there was a time when few people were looking into the topic and the experiences of women of color, said Canty, a midwife of 30 years and Associate Professor and Director of the Health Equity in Nursing Program at the University of Massachusetts Amherst Elaine Marieb College of Nursing. She knew her patients of color were facing certain health issues at higher rates but didn't know how to name what she was seeing and help others understand.
At the time, Canty said most people blamed the disparities on a patient's education, economic status or how early they started care. But in her research, these explanations didn't align with what the birthing women in her community and abroad told her.
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In Connecticut, the latest data from the state Maternal Mortality Review Committee shows there was an average of five pregnancy-related deaths every year from 2015 to 2020. An estimated 90% of the pregnancy-related deaths were preventable, with more than half occurring a week or up to a year after giving birth.
Of the 31 deaths, six were Black women, equating to about 19%. Their deaths are disproportionately high considering Black residents make up about 10.7% of the total Connecticut population. Medicaid patients and people without a bachelor's degree were also overrepresented in the data.
Black women were also more likely to experience an outcome during labor and delivery that resulted in health complications down the line, known as severe maternal morbidity, according to the Connecticut Review Committee. Black women only accounted for 12.8% of all live births. In comparison, Hispanic and white women's birth rates exceeded the death rates.
Discrimination may have contributed to 70% of the deaths from 2018 to 2020, the review committee found. This can include negative patient-provider interactions, lack of care coordination, feeling dismissed and cultural incompetence.
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Canty has found similar findings in her own research on maternal health disparities. One of her studies found that medical providers were more likely to classify symptoms and behaviors among racialized groups as abnormal or unhealthy, known as pathologizing.
The impact of bias on care and treatment in maternity wards is well-documented nationally, but those incidents aren’t highlighted when expecting parents look at general reviews for choosing a place to give birth. This led a N.Y.-based journalist to create the IRTH app (taking the B for "bias" out of birth). IRTH partners with hospitals to compile data and provide patient-reported insights on perceived experiences of bias and racism. It's the only site where women of color can review their birth experiences as a way to eliminate bias within maternal birth situations in the future.
Canty said systemic racism and the resulting trauma contribute to a form of chronic stress that wears down people of color, known as "weathering," creating worsened health outcomes.
"What came out of my research is that race does matter, but also realizing how that shows up in our care," she said. "It shows up in how we care for ourselves."
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Creating supports
Canty, who was inducted into the American Academy of Nursing in October, started offering virtual consultation in 2020 after completing her doctoral research and COVID-19 highlighted significant racial health disparities. The killing of George Floyd also began changing conversations around race, systemic racism and its impact on communities of color.
Although she wanted to create something for the community, Canty didn't have the financial support to set up and sustain a nonprofit at the time. However, she received a grant from the Wild Gifting Project, which offers funds for unique ideas that will help local communities.
With the grant money, Canty hired a lawyer to help her with the legal paperwork. Throughout the process she also relied on community resources and advice from friends who run their own nonprofits.
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Her proposal to become a nonprofit focused on her research, naming a problem and immediately presenting a solution through Lucinda's House. The state Department of Consumer Protection approved her in 2022, and she officially became a nonprofit.
When she launched, Canty already had pregnant women calling and asking for support. She runs most of her programs virtually or in public spaces, like libraries. She moved Lucinda's House into it's first brick-and-mortar location on Oct. 1st at the former Stony Hill School in Windsor. Canty works with around 150 women yearly offering various types of one-on-one consultations.
"I thought it was going to be small, and it just blew up very quickly," she said. "The piece I wasn't expecting was the support that I was getting and realizing how many people wanted the support."
How Canty helps her clients and their families depends on each person's needs, concerns and how often they meet. In general, however, she said many of the families she works with often feel alone and isolated in their experiences. They have questions about potential life-changing decisions but don't have reliable education and resources to learn their options and figure out what is best for them, so they turn to her.
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Often the first time Canty connects with a client is impromptu — during a crisis.
One woman, for example, was experiencing preterm contractions and wanted her doctors to induce labor. After the providers refused, the mother's doula called Canty for a second opinion. A mother of two herself, Canty said her goal in the conversation was to get the mother's mind off the delivery. She explained that the mother’s body was naturally trying to start labor and encouraged her to find an activity to help her relax like watching a movie or playing with her other children. Within two hours of taking the advice, the mother successfully delivered her baby.
Other women and their families are looking for long-term support throughout their pregnancy, Canty said. Their work typically starts early in the pregnancy. By speaking with her clients over numerous sessions, each building on the last, Canty works to identify major stressors, figure out what's important to her clients regarding pregnancy, and connect them with trusted resources when necessary, like a doula or books about birthing. She currently meets consistently with eight women with regular sessions stopping after they give birth.
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The education piece also improves patient-provider interactions by helping families better prepare for visiting a doctor's office. She encourages her clients to ask physicians questions to learn more about what's happening and why providers are making the suggestions they are.
"A lot of times their first meeting with me is to talk about what's going on with them and giving them information," she said. "I think sometimes they realize talking about it… just gives them ease. It gives them peace."
Although her work primarily focuses on the mother, Canty incorporates her client's partners, like Oliver. She said fathers often feel invisible in pregnancy-related conversations but want to be more involved and have a space to explore their emotions, too.
When they first met Canty, Oliver said he was so focused on helping Ashley through the pregnancy that he wasn't in tune with his emotions. He had a lot of questions about the best way to support his partner and his role in everything, but he had no outlet or resource to go to.
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So he was surprised when Canty asked how he was doing in their first meeting. She asked who was supporting him through being a new parent, validated what he was already doing, and provided different insights. She also encouraged him to seek out counsel whenever he needed it.
"It allowed me to take a step back and realize that I am also part of this process," he said. "In order for me to support Ashley through everything that is going to happen, I also need to make sure that I am in the right state of mind."
Canty encourages partners to speak their minds through creative outlets, like photography and journaling, to process the emotional changes and ensure they don't internalize complications as their own shortcomings. She's found that art has a way of helping clients and their partners process trauma while highlighting the beauty of pregnancy.
Community education and engagement
Outside of the one-on-one consultation, Canty runs in-person and virtual education group programs. She recently launched a weekly midwife-led health and wellness group for pregnant and new moms at Windsor Public Library as part of a maternal health series with the library. She's also starting a monthly maternal health support group there in September.
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The community baby showers, which connect families with educational resources, medical providers and free baby supplies if needed, are some of Canty's most attended events. She estimates that the first shower in 2022 drew more than 170 families. Since then, she's hosted seven showers throughout the state, from Hartford to New London; around 800 people have attended in total.
Lucinda's House remains primarily grant-funded and Canty does most of the work herself, but has hired an additional employee to help organize programs. She also relies on volunteers and donations to run major events, like the community baby showers. One time she set up the New Britain community baby shower with medical students studying at Central Connecticut State University and used the university's space to hold it.
Canty also noticed that more institutions, like Yale New Haven Hospital, are reaching out to connect with grassroots nonprofits to bring their services to the community directly and rebuild trust. At the first shower they attended, she said Yale providers were present to answer questions and offer a virtual tour of the labor and delivery unit.
Since she is just one person, Canty has been eager to work with the programs, organizations and resources already in place to support her clients and their families.
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At one community baby shower, she hosted a representative from the Special Supplemental Nutrition Program for Women, Infants and Children, known as WIC. Many families were able to test their qualifications and found they could receive services.
In Ashley and Oliver’s case, Canty connected them with a local doula to help them develop their birth plan. Ashley also attended educational programs, including breastfeeding and midwifery. She said that not only is it helpful to learn about the options available to her, but connecting with other parents has also been really positive for them.
"(Pregnancy) sometimes feels like a lonely road, because you're not always pregnant along with your community," Ashley said, adding the events will continue to have more people like her. The next community baby shower is set for New Britain on April 5.
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Addressing trauma from traditional care
Even women who don't experience complications have reported being traumatized by the care they receive. Canty said women feel like they aren't being heard, aren't given enough information or feel disrespected during a medical visit.
However, doctors who are hypervigilant when not medically necessary can have negative effects too. Canty’s noticed over the years how medical providers sometimes operate with fear-based medicine. She explained that providing care is often complex and requires walking the line between offering preventative care and identifying issues to treat them.
In her experience, Ashley said it felt like doctors were quick to label her as high-risk based on national statistics since she has a high body mass index, is older and is Black. Despite the data, she said that she's always worked to be healthy and live an active lifestyle as an athlete and outdoor enthusiast.
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She also felt that medical providers were expecting her to "blindly trust" them on medical treatment rather than being open to a conversation. She said doctors told her everything looked fine, but they then proposed and explored a situation with 1% probability.
"That, to me, blows my mind," Ashley said.
Working with Canty helped her and her partner feel empowered in the pregnancy journey, even during the scary moments, she said. Ashley was 24 weeks pregnant when she went to the hospital for a regular evaluation to conduct tests and monitor. Medical providers kept her overnight but didn't tell her what they were monitoring.
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Doctors said the baby's heart was beating at a questionable rate at some point in the monitoring. As the doctors talked more about inducing early-term labor that day, Ashley said it felt like she was becoming a self-fulfilling statistic in their care.
She asked questions about the procedure, why it was necessary and more, but wasn't given a straight answer. Ultimately, she and Oliver decided against the doctor's advice and left. They turned to Canty for support afterwards.
Canty has observed that more women are being told to induce pregnancy earlier even if nothing is medically wrong. She said this may cause the mom further problems and lead to more complicated pregnancies in the future. She's also heard stories of women needing to make life-altering decisions without the proper information or enough time to think on it or question their provider.
In Ashley’s case, Canty said it felt like the need for inducing labor was based on a hypothetical. The baby was also stable for several hours before being discharged and there would've been other indicators if something was truly wrong. If they had induced preterm labor, Canty said Ashley's baby would've been living in the neonatal intensive care unit for weeks.
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Since walking out on their original provider, the couple has found another hospital that has been more helpful and understanding. Both the baby and Ashley are still healthy, and the due date is late September or early October.
However, the stressful visits and constant tests also took a toll on Oliver. When doctors don't listen to their patients, he said, they make the patient feel infantilized, and any pushback from the patient feels antagonistic.
He said patients like them want to be active in their decision-making and understand what is going on with their health, which Canty encourages them to do.
"It's empowering — and in the sense that now we are in the driver's seat," he said. "No doctor or nurse is going to dictate how this pregnancy will go.”
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Having someone to rely on, like Canty and the larger community, has helped Oliver and Ashley enjoy the preparations for the baby's arrival. They plan to develop their birth plan with their doula closer to the due date, but in the meantime are decorating their baby’s room and making final decisions on names. Ashley gave birth to their baby in September and has been doing fine, Canty said.
"Instead of being in terrified, scary mode, I get to enjoy (the baby's) movement," Ashley said. "To me, that's been my joy. It's my sign that you're doing alright."
This article was originally published as part of "Agents of change: Community efforts to overcome racial inequities" series with the Groundtruth Project, a nonprofit journalism organization.
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