Ebony Johnson could never have imagined that the day after Mother’s Day — her 39th birthday — she will also celebrate the life of twin daughters who died shortly after birth three weeks ago.
Johnson, a North Charleston trauma counselor and mother of a 14-year-old daughter, was surprised in early September to learn she was six-weeks pregnant. An even bigger surprise followed — she was carrying twins.
Then six weeks later, Johnson was reeling again when doctors diagnosed one of the twins with anencephaly, a lethal congenital disorder that placed her healthy baby at risk.
Doctors closely monitored the twins as Johnson, who suffers from hypertension, complained constantly of headaches and joint swelling. Her blood pressure rose to stroke-level numbers, but Johnson said her complaints were ignored.
Meanwhile, Johnson took each day in constant fear that her baby with anencephaly could die in her womb. “She’s holding on to (life) through the umbilical cord,” Johnson remembered. “She was growing, kicking, spinning.” Then Johnson said she placed a near unrealistic expectation on her to stay alive so her sister could grow and live.
The risks for mother and child
As a Black woman, Johnson was at a greater risk of not surviving her pregnancy because of her race, age, previous medical condition and discrimination, according to a new study released by the S.C. Department of Health and Environmental Control (DHEC).
In 2020, public health officials saw a 16.3% decline over three years in the pregnancy-related death rate for White women, but the rate for Black women in the same span rose 69.1%, according to a 2024 maternal death briefing DHEC prepared for state legislators.
The study took a detailed review of 60 deaths between 2018 and 2020. Of that group, Black women were four times more likely to die compared to White women. A majority of all women who were older than 40 years old died from pregnancy-related reasons, and a third of them died within 43 days to a year after childbirth.
Tragic hospital admission
Johnson was finally hospitalized on March 13 at the Medical University of South Carolina. She was not admitted, she said, because of her complaints. Johnson said she was eventually given the medications she asked for to lower her blood pressure after her hypertension affected her daughter’s placenta, decreasing the chance of a normal delivery.
Due to complications, however, Johnson did not carry the twins to full term. At 12:34 p.m. on March 29 — Good Friday — Ashton Danielle, who had been diagnosed with anencephaly, was delivered via an emergency cesarean section. She lived 33 minutes and died on her mother’s chest. A minute later, Aspen Leigh, was born, but she unexpectedly died three days later from acidosis.
Discrimination, mental health and access
Danielle Wingo, director of DHEC’s Bureau of Maternal and Child Health, said the majority of the 60 pregnancy-related deaths in South Carolina from 2018 to 2020 were preventable. Most of those deaths occurred one week to a year after childbirth, and a majority of the women who died lived in rural areas.
To increase access to care for women in rural areas, DHEC is seeking “funding for a mobile unit to provide prenatal, postpartum and general pediatric care … in these rural counties,” she said. “We have to meet [pregnant women] where they are by bringing access to care closer to people so that they will take advantage of making doctors appointments.”
Of the 14 South Carolina counties without obstetric services, 11 are rural. The rural counties are: Abbeville, Allendale, Bamberg, Barnwell, Calhoun, Chester, Chesterfield, Edgefield, Fairfield, Hampton, Lee, McCormick, Saluda and Williamsburg.
Early data from the pandemic years beginning in 2020, Wingo added, suggests the pregnancy-related mortality rate increased for Black women and decreased for White women.
The South Carolina Maternal Morbidity and Mortality Review Committee (SCMMRC), created in 2016 by the General Assembly, prepared the study. The 50-member commission is made up of physicians, coroners, social workers and community advocates who closely reviewed deaths of pregnant women statewide.
The committee determined that discrimination was linked to a third of the pregnancy-related deaths, Wingo said. The others are obesity, substance use disorder and mental health conditions.
Discrimination in the health-care setting, Wingo said, is the result of class, economic and racial bias. Often a pregnant woman’s complaints about her level of care or the way she is feeling is dismissed, Wingo said. To combat this problem, the Centers for Disease Control created the Hear Her Campaign and DHEC participates in it, she said.
The Southeast region has higher rates of maternal mortality, and data suggests South Carolina ranks 8th among its peers, said Kimberly Jenkins, a lead nurse abstractor for DHEC’s maternal mortality review program.
Historically, maternal mortality has been higher in the South, according to the National Institutes of Health, Journal of the American Medical Association (JAMA) and other sources, with racial disparities, mental health conditions and substance use disorders considered as contributing factors, she said.
SCMMRC has formed two work groups to study mental health conditions, substance use disorders and racial disparities, Jenkins said. “The goal is to eliminate deaths, but to do that it requires a multi-faceted approach at various levels, to include patients and families, medical providers, health care facilities and hospital systems and community outreach,” she explained.
Three-quarters of the women who died are Medicaid recipients, the study said. In 2022, South Carolina extended the insurance coverage for pregnant women for one year after childbirth, Wingo said. “That is fantastic because look at when a majority of the deaths occur,” she added. The expanded Medicaid coverage, however, only applies to pregnant women.
Coping with stress and a celebration of life
A doula from the Beloved Early Education and Care (BEE) Collective visited Johnson while she was in the hospital to console her after the loss of her twins and to provide her with resources during her postpartum period.
Being in her late 30s, Johnson said she’s keenly aware of the risk her age places on her surviving the postpartum period. As a trauma counselor, she’s also concerned about mental health issues that can arise after childbirth.
Johnson said the coming Mother’s Day is difficult because of her strained relationship with her mother. To ease the heartache of this Mother’s Day weekend, Johnson plans a quiet gathering on her birthday with family and friends.
The decision to hold a celebration of life for the twins on Mother’s Day weekend was intentional, Johnson said with a slight chuckle.
“It is a holiday that I am happy to see go, but I didn’t want to be sad all weekend,” she said. “I’ll be thinking about my babies [even with] the heartache that comes with it, it really does bring me joy … and it will allow my community of people, who have stood with me, to also express their feelings.”
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