Black mothers grieve the babies they lost—and help more survive their first year

In Cleveland, Black babies are six times more likely to die before their first birthday than white infants. These initiatives are trying to change that.

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Jessie Long, a Cleveland native, gave birth to a daughter named Elena in October under the guidance of doula Lindsey Lott. A new mother dealing with gestational hypertension, Jessie worried that her baby might be stillborn, which had happened to other women in her family and is more common among Black women.

Pregnancy was rocky for Cheryl and Sean Martin from their first, in 1996. Cheryl, 27, couldn’t keep food down. She was transported to the hospital on several occasions for vaginal bleeding. When she told her doctor she was worried, Cheryl said, he seemed to dismiss her concerns: “Nothing was really ever done until I went to the hospital and complained,” Cheryl recalls. “Then I was sent home—and the next thing you know I’m actually en route to the [hospital] and she was born early.”

The Cleveland couple’s daughter, Cydnee Janae Martin was born six weeks premature on May 29, 1997, and weighed just four pounds six ounces. She remained in neo-natal intensive care for about three weeks before being released. “When she first came home she actually turned blue on us,” Cheryl says. “We patted her back and she was okay, but we learned shortly thereafter that she had asthma.”

From that perilous start, Cydnee quickly gained weight; she grew up as a healthy child who loves sports. When Cheryl became pregnant again four years later, she hoped things would be different. But she experienced the same physical symptoms, and again felt doctors weren’t taking her pain seriously. In June 2001, she went into premature labor at 27 weeks.

“When I got to the hospital I was told that I would have to wait to be seen by a doctor. I was bleeding at the time and very scared,” Cheryl remembers. “My heart rate was going up and down and there was a point where blood just flowed out of my body. My mother insisted someone come and see me, and I was told again that the doctor was handling an emergency.” (Giving birth in the U.S. is surprisingly deadly—especially for Black mothers.)

Cheryl eventually had a C-section and gave birth to a baby boy. She and Sean named the baby Colin DeSean Martin, but when Colin didn’t cry, Cheryl knew: He was another baby she couldn’t take home right away. The Martins visited Colin daily in the neo-natal intensive care unit. In July—on his parents’ wedding anniversary—Colin nearly succumbed to an infection. He recovered then, but three months later could not; he died on Oct. 5, 2001.

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Cheryl Martin lost her son, Colin, after he was born premature in 2001. Every morning she pays tribute to his memory, here at Euclid Creek Park in South Euclid, Ohio. "I lost my baby but the unconditional love I feel for him will never die,” she says.

Cuyahoga County, Ohio, where the Martins live, has had one of the highest infant death rates in the country for more than half a century. Defined as the death of a child before age one, infant mortality disproportionately affects the African-American community. Nationally, Black infants die at more than two times the rate of white infants; in Cleveland, nearly six Black babies die for every white baby. Higher rates of infant death are experienced by Black women irrespective of socioeconomic background than by white women without a high school degree.

Nationally, Black women are also three times more likely to die in childbirth than white women, and are more likely to experience miscarriage and stillbirth. Former first lady Michelle Obama candidly wrote about her miscarriage in her memoir, Becoming. Model and cookbook author Chrissy Teigen and her husband, musician John Legend, publicly acknowledged their recent loss of a baby due to complications. Meghan Markle, the Duchess of Sussex, recently opened up about suffering a miscarriage in July: "Losing a child means carrying an almost unbearable grief, experienced by many but talked about by few."

In Cleveland, government and community organizations are taking steps to help more Black children live beyond their first birthday. Prematurity accounted for 58 percent of infant deaths in Cuyahoga County in 2019. More than 14 percent of Black babies in Ohio were born preterm, significantly higher than the state's overall preterm birth rate of 10.3 percent and the national rate of 10.2 percent. (This blood test could predict when babies will arrive early.)

In Ohio’s Cuyahoga County, infant mortality exposes racial inequality.

The death rate of Black babies under one year old has for years been at least three times as high as that of white infants. Premature birth is the leading cause of death.

Infant deaths per 1,000 births

Deaths due to prematurity

White

Black

4.8

15.4

2019

4.5

14.9

2018

2.8

15.6

2017

4.8

14.6

2016

5.5

18.5

2015

4.5

14.4

2014

14.5

4.8

2013

5

14.3

2012

16.3

5.6

2011

4.8

16.5

2010

DIANA MARQUES, NGM STAFF

SOURCE: CUYAHOGA COUNTY CHILD FATALITY REVIEW BOARD

First Year Cleveland, an organization founded in 2015 to reduce infant death, advises expectant mothers to enroll in centering pregnancy programs, which have shown promise in increasing birth weight and decreasing prematurity rates. The program groups women with approximately the same due date together with healthcare providers for 10 prenatal visits. The women have one-on-one time with their provider before coming together to discuss a variety of health topics; the goal is to help them become more informed and feel less alone during pregnancy.

While prematurity is a leading cause of infant mortality—alongside birth defects, sleep-related deaths, and sudden infant death syndrome (SIDS)—infant loss in the Black community is deeply tied to individual and structural racism. As the Cleveland City Council asserted when it declared racism a public health crisis in March, infant mortality, like economic security and educational achievement, is an example of “the negative repercussions of historical racism.”

Like Cheryl Martin, many Black women say they feel judged or dismissed by the healthcare providers they see during pregnancy. “Women have talked about going to an appointment and someone making an assumption that you’re on Medicaid. Or they make an assumption that you’re unmarried because you’re at an appointment [alone],” says Katrice Cain, the racial disparities program director at First Year Cleveland.

Black women also face microaggressions in their daily lives that trigger stress, such as being stopped by a police officer or enduring unconscious bias in the workplace. Studies from the National Institutes of Health have shown that Black women of all income levels typically have the highest allostatic load scores—that is, the highest measures of wear and tear on the body due to prolonged chronic stress. Chronic stress during pregnancy can cause premature birth, hypertension, diabetes, preeclampsia, and miscarriage.

To combat structural racism within the healthcare system and improve in-patient care for people of color, First Year Cleveland has developed workplace bias and anti-racism trainings for three local hospital systems and trained over two dozen staff members in those institutions to conduct them. They’ve also started showing “Toxic”—a short film about infant loss from a Black woman’s perspective—at medical grand rounds, monthly sessions where clinicians learn about health topics and case studies.

“We’ve received positive feedback. A lot of people found the film powerful,” says Cain. “Then immediately following we have a discussion. We developed the discussion guide to help other organizations that may just need to figure out, how do I start this conversation?”

Sabrina Roberts, co-chair of First Year Cleveland's Pregnancy and Infant Loss Committee (PAIL), hopes that Toxic will help more women speak up: “Often times, people feel like they don’t have a voice when they go into the provider. So how can we do something in an artistic way to help them along with that?”

Yolanda Lucas had three miscarriages before giving birth to her son. After the second miscarriage—the result of an ectopic pregnancy, where the egg fertilizes inside the fallopian tube instead of the uterus—she became deeply depressed. Between working a full-time job in pharmaceutical sales, taking care of a mother-in-law with Alzheimer’s, and co-owning a business, she had very little time to acknowledge her grief. Her husband, Jason, also shut down from the loss.

Three years later, in 2006, Yolanda felt ready to try for another baby. While preparing to undergo in vitro fertilization (IVF), she discovered that she had been living with endometriosis, a condition that can cause infertility. After getting surgery to remove fibroids from her uterus, she began IVF and soon became pregnant.

At the first ultrasound, “they heard two heartbeats,” Yolanda remembers. “And that’s what I wanted, twins. I named them Harper and Hannah.”

But when she went back to the doctor a month later, there was only one heartbeat. Still, Yolanda was grateful. She gave birth to a healthy, full-term boy in 2007, her dream of being a mother fulfilled after ten years. The Lucases tried for another child a year later, but that resulted in another loss.

The grief of losing those children stayed with the Lucases, and in 2018 they joined the First Year Pregnancy and Infant Loss Society, a support group that hosts get-togethers and remembrance events and provides counseling services.

“It was life-changing. That’s when I first started really opening up and allowing myself to feel it,” Yolanda says. “Not just with the pregnancy loss, but other losses I’ve had in the past as well.”

PAIL recently launched Our Wellness Network, a group of African-American therapists focused on grief recovery assistance for African-American families who have dealt with pregnancy loss, infant death, or both.

“We built that model out of speaking to parents who have experienced a loss,” says PAIL co-chair Tracy Carter. “They all talked about how difficult it was to find someone to speak to [who] already knew their experience and could relate to them.”

PAIL co-chair Sabrina Roberts drew on her own experience with premature birth when founding the group. When she was pregnant, she felt something was wrong and called the doctor’s office so many times to voice her concerns she believes they flagged her number. Her daughter was born at just one pound eleven ounces. “I was very, very sick and I felt like I was dismissed,” she says. Her daughter, now 13, stayed in the hospital for two months after birth, and Roberts worried she wouldn’t make it.

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Doula Lindsey Lott visits Jessie Long after her baby’s birth. Jessie worries about sudden infant death syndrome, which Black babies are three times more likely to die from than white babies. “We are concerned that we will miss more subtle signs of problems during sleep,” Jessie says, so she and her husband have created three options for Elena to sleep safely.

Looking back, Yolanda wishes she had spoken up sooner when she felt something was wrong.

“My biggest regret is that I didn’t advocate for myself or even seek another doctor,” she says. “The time that I did was the time I was successful with my son, because I wasn’t taking no for an answer.”

Five months from her due date, Jessie Long felt anxious and under-prepared. Pregnant for the first time and dealing with gestational hypertension, she had been taking parenting classes online but wanted someone to help her through the pregnancy. She reached out to Lindsey Lott, a Cleveland-based doula who provides physical, emotional, and educational support to women before, during, and shortly after they give birth.

When the two connected, Lindsey spent an entire day with Jessie going over breathing and birthing techniques. She taught Jessie different positions to make herself comfortable and prepared her mentally for birth. (With hospitals full of COVID-19 patients, this mother chose to give birth at home.)

“I’m also a nutritionist so it’s really important to me that women understand the things that they are eating and the things that they are doing in terms of exercising and stress,” Lindsey says. “It can mean the difference between high blood pressure and preeclampsia, and having infant mortality or having the mother pass away.”

Jessie worried that her high blood pressure would harm the baby, or that she would have a stillborn baby as both her grandmother and her first cousin had. Lindsey reminded her daily to eat healthy foods and to take her blood pressure, and eased her fears.

“I have a lot of gestational hypertension [which] actually got worse right after birth to the point where they had to put me on anti-seizing medicine and a magnesium drip. So she was really helping me through that,” Jessie says.

During labor, Lindsey rubbed Jessie’s back and talked her through the pain. Her daughter, Elena, was born at 8:22 a.m. on October 24, 2020. Jessie was thrilled, but worries that Elena could succumb to SIDS, which Black babies are three times as likely to die from than white babies. The Longs make sure that Elena’s sleeping spaces remain clear of toys and extra blankets, and always put her to sleep on her back. They also swaddle her to guard against anything blocking her airway.

“It’s like you finally get through all this and then… because I’m a minority, because I still have high blood pressure, I have to worry about, ‘Will I be able to see her grow up? Is something going to happen to her or is something going to happen to me?” Jessie says. “Lindsey’s really been helping me with that. Just keeping my anxiety under control and making sure that I’m on my blood pressure medicine.”

Lindsey recently joined Birthing Beautiful Communities (BBC), a collective of Black doulas. Founded in 2014 by Christin Farmer, BBC focuses on providing support to pregnant women at the highest risk for infant mortality.

“We’re like super doulas. We are with the parents for about 80 weeks,” says Farmer. “We’re with the mothers during the pregnancy, at the labor and delivery, and until the baby is a year old.”

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Lindsey Lott visits Jessie Long and Elena at home after the baby’s birth. Jessie’s gestational hypertension worsened after labor, and Lindsey helped her keep it under control.

BBC facilitates free workshops and classes focusing on the unique experiences of African-American women and delves into historical and generational traumas that still exist in the Black community today. They’ve expanded to a second location in Akron, and plan to open a birthing center—the first in Ohio—to provide women in Cleveland with more options for labor and delivery.

“We are addressing the needs of women, of African-American women specifically, based off of the issues they may have gone through in their lifetime and the things that have been passed down to us generationally,” says Farmer. “Those things that are very unique to us as African-American women.” (A photographer turned the camera on her own pregnancy after documenting high mortality rates for Black mothers.)

When Cheryl Martin discovered she was pregnant for a third time, in 2006, she searched for a doctor who would look at her history of premature labor and infant loss, sit her down, and explain what was going on with her body. When she found one she trusted, he became the first to tell her that she had an incompetent, or weakened, cervix. That condition, more common in African-American women, can cause premature birth and pregnancy loss. Martin’s doctor performed a cervical cerclage, closing the cervix with stitches, and put on her bedrest.

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Cheryl Martin hugs her children, Cydnee and Sean, at Euclid Creek Park in South Euclid, Ohio. Cydnee was born premature; Sean was born full-term after Cheryl found “the right doctor who cared enough, who took the time to look at my records and see that I was high risk,” she says.

“I was on bedrest for six months. So I got the right doctor [this time],” Martin says now. “I got the right doctor who cared enough, who took the time to look at my records and see that I was high risk. [He made sure] I was comfortable throughout my entire pregnancy. That made a difference.”

Her son, Sean Jayden Martin, was born full-term on February 16, 2007.