Feature

BY RICHARD H. WEISS

Ebony Smith-Thomas likes to celebrate anniversaries.

In August, she held what might be described as a festival on Facebook as she counted down the days to the first anniversary of her heart transplant. On the big day, she treated her hundreds of fans and followers to a YouTube video set to music and with a mashup of favorite images she collected during the weeks she spent in the hospital.

On the day we last Zoomed with each other, Smith-Thomas had been sharing images on Facebook from a rather more grim anniversary. It was the day — just weeks after the transplant — that she underwent a second open-heart surgery to address a blood clot. Still, she marked it in an upbeat way with a selfie in which she signaled victory with two fingers and wore a mask saying, “EBONY IS A SURVIVOR.”

Smith-Thomas marks these occasions in part because she was often unconscious or only semiconscious back then. Now that she is clear headed, she wants to remember what happened. But the anniversaries also give her a chance to inspire other people who share her plight and “to thank the ones who were praying for me, encouraging me and showing me love.”

There are other anniversaries in her life to mark as well, but they are hazier — and the support system perhaps not as strong. There was that day in mid-September, in 1985, when physicians at Cardinal Glennon Children’s Hospital diagnosed Smith-Thomas with lead poisoning. Her mother, Debbie Thomas-Smith, remembers a physician telling her that her toddler likely would be impaired for the rest of her life.

A hospital record that Debbie saved indicates the physicians had worked at flushing the lead from Ebony’s body. The record also indicates that a “social service consult was obtained to look into the source of lead.”

The source, according to Debbie, was paint chips that Ebony had eaten while the family had been residing in student housing at Saint Louis University.

In the immediate aftermath of her daughter’s diagnosis, Debbie remembers asking the university to eliminate the lead contamination in her apartment and to provide support for her daughter’s care. She said officials never responded in a meaningful way. She contacted an attorney about the issue, but said he quickly lost interest.

Despite the dire prognosis, Ebony Smith-Thomas, now 38, recovered and did quite well for the next three decades of her life.

By her early 30s, she had managed to earn a bachelor’s degree and dual master’s degrees in business management and information systems. She would go on to serve for nearly fourteen years with the nation’s largest operator of campus bookstores, while also raising two sons, Clayton, 5, and Khamari, 16, and parenting two beloved nieces, Mykinzi, 21, and Mareah, 23, through their adolescence.

And then, five years ago, Smith Thomas found herself at death’s door with an illness called peripartum cardiomyopathy. And she began to wonder ...

Did the lead poisoning from her childhood have anything to do with her current condition? Does Saint Louis University bear some responsibility to help her, now that she can no longer work and must rely on government benefit programs to maintain her health and support her children? Did the “social service consult” lead to any mitigation efforts at the student residence? Did anyone else ingest paint chips in the student housing? If so, what were their outcomes?

This story was produced in partnership with the Pulitzer Center.

Environmental racism

Whatever the answer to these questions might be, it’s easy to connect Smith-Thomas’ childhood experience to what many publichealth practitioners and socialjustice advocates have identified as environmental racism.

Civil rights leader Benjamin Chavis is credited with introducing the concept in the 1980s, describing it as “racial discrimination in the enforcement of regulations and laws, the deliberate targeting of communities of color for toxic waste facilities, the official sanctioning of the life-threatening presence of poisons and pollutants in our communities … .”

Smith-Thomas would qualify in the “presence of poisons” category. She was one of thousands of St. Louis children afflicted with lead poisoning because of their exposure either to lead-based paint or tap water running through lead pipes — or because they lived in a neighborhood with airborne contaminants.

Smith-Thomas’ malady — as her mother Debbie Thomas-Smith later determined — came from eating paint chips from a windowsill located in what was once the Coronado Hotel. Thomas-Smith had caught her daughter peeling the chips from the sill. She couldn’t know if perhaps she had done it before. It was only after some time, when her child began crying and complaining that her fingers hurt, that Thomas Smith sought medical attention for such an unusual symptom.

SLU’s role in the lead-poisoning crisis

Ebony Smith-Thomas’ lead-poisoning diagnosis came in the mid-

1980s as St. Louis was struggling with a plague of lead poisoning falling most heavily on families of color in the city’s most vulnerable neighborhoods.

Almost every year since the s, public health officials were able to document at least one case of a child dying from lead poisoning, with hundreds more identified as having severely high levels of lead in their blood that affected their cognitive abilities and their behavior. Mass screening programs began in the 1970s, and advocacy groups organized protests to pressure regional leaders to do more.

Notably, the Saint Louis University School of Medicine organized a Get Out the Lead conference in 1971, and by 1972 the city had established a lead-poisoning evaluation center. Around that time, the city introduced stricter leadabatement statutes. More funding and staffing would follow in the 1980s. n the early 2 s, city officials would proudly say that they were making significant inroads against lead poisoning. But not long after that, the city’s public-health department underwent budget cuts. The city would have many fewer people to address compliance with lead-poisoning mitigation. Still, there was some good news. Older buildings with lead issues either were getting demolished or repainted with non-toxic paint. Manufacturers were getting the lead out of their products.

Many children with lead poisoning exhibit no immediate symptoms, and so the toxic effects are given time to take a toll on brain function. In Smith-Thomas’ case, the hospital report from September 1985 states that her lead level had been “checked at day care as long ago as 10 months” and there were signs of lead poisoning. “Follow up was poor in the meantime” and the lead level increased. “Symptomatically, the mother reports the patient has been somewhat clumsy and increasingly so over the last several months.”

From her own recollection, Thomas-Smith remembers that as she sought attention for her daughter, a physician at first discounted the symptoms. But Thomas-Smith remembers returning to the doctor and insisting that she take another look. That ultimately led to six days of treatment at Cardinal Glennon, from September 6 to September 11, 1985.

Even with early intervention, some lead remains in the body, seeping into the bones where it can linger throughout life.

The family’s apartment, inside the old Coronado Hotel, built in the 1920s, was at 3701 Lindell Boulevard. Designed by architect Preston J. Bradshaw along with other significant structures along that boulevard, the hotel fell on hard times in the 1960s and closed. SLU purchased the Coronado in 1964 to use for student housing, renamed it Louis Hall, then closed it in 1986. The oncegrand building stood vacant and fell into disrepair until developers Amrit and Amy Gill purchased the property and began reviving it in 2002 with apartments, a restaurant and event spaces.

University officials were asked to see if they could find records relating to Ebony Smith-Thomas’ stay there. Debbie Thomas-Smith and her family moved in while she pursued her education as a paralegal at the law school across the street. Looking back, and knowing what she knows now, Thomas Smith finds it ironic that some professionals at the university’s medical school were at the forefront of lead-poisoning mitigation, while other university officials turned a blind eye to her daughter’s plight.

“Not just a blind eye,” ThomasSmith says in a recent interview. “The SLU on-campus housing staff treated Ebony’s health crisis like their mouths were sewn shut, too.”

Maybe still. University President Fred Pestello, a sociologist by training, has through his Twitter feed and other communications taken strong stances regarding matters of racial equity and social justice, but the university had little to say about this instance of lead poisoning or the family’s concerns. Jeff Fowler, SLU’s vice president of marketing and communications, said he could only state that Thomas-Smith was a student there in 1984 and 1985 but could not confirm her connection to the Coronado/Louis Hall. Nor did the university provide any information about its administration of

the Coronado.

Fowler declined to provide any answers to follow-up questions, including: Does the university have any record of lead poisoning having occurred at the Coronado? Will the university check to see if it has any record indicating that lead-paint issues were ever addressed at the Coronado? Would a university official speak to Smith Thomas and her mother so they could share details to make a record search more effective

Fortunately, Smith Thomas rebounded strongly after getting treatment. She sailed through school and on to college, earning high marks along the way. “My mom never let me [use lead poisoning] as a crutch,” she recalls. “When computers came out, probably was the only kid who had a computer. She got me Hooked on Phonics. She said, our number one job is getting your education.’”

Back in the day, it was common to use the phrase “mentally retarded.” As she grew up, Smith Thomas sometimes heard it applied to her. t carried a special sting, because she was smart — and knew it. She is resilient and determined, too.

“ did college because was told that wouldn’t be able to go to college,” Smith Thomas says. “ felt like had to prove the doctors wrong. And did.” n 2 , she landed a job with Follett Education Group. She worked in the bookstore Follett operated at Harris Stowe State University while earning her bachelor’s degree at the university. By 2 , while working on earning dual master’s degrees at Webster University, Smith Thomas had been promoted to store manager.

The work was complicated and stressful, requiring at once great people skills and T know how. But it would fill her with joy to see the students who she supplied with their texts freshman year come into the store years later to pick up their mortarboards and gowns.

Momma to the rescue

Then in 2 6, on a warm day in late May, Smith Thomas’ world turned upside down. t had been just two months since she birthed her second child, Clayton — or Clay Clay as family and friends affectionately call him. Smith Thomas was living in an apartment in the Hyde Park neighborhood in north St. Louis, along with her two sons and two nieces, when the air-conditioning failed. They packed up and moved in for what they hoped would be a short stay with Smith Thomas’ mom and dad at their home a few miles west in the Jeff ander Lou neighborhood. That night, Debbie Thomas Smith noticed her daughter sleeping fitfully and heaving with a dry cough. “There’s such a thing as walking pneumonia,” she told Smith Thomasthe next morning. “And that could kill you.”

At first, Smith Thomas remembers thinking, “Well, nursing new moms generally don’t sleep all

that well.”

But her own mom had always been on high alert when it came to her youngest daughter’s health. Family members called her Dr. Webbie Smith, as in WebMD, because, as Smith Thomas puts it, “if she doesn’t know [about an illness], she is going to find it and figure it out. She reads and reads.”

And so when it comes to her health, Smith Thomas says, “There’s nothing feel like my momma don’t know.” t turned out, Dr. Debbie Webbie had been right.

After several hours at an urgentcare center where tests confirmed pneumonia, Smith Thomas was taken to Barnes Jewish Hospital. There, more tests revealed something worse peripartum cardiomyopathy, or PPCM. The life threatening illness affects women who are either in the last month of pregnancy or first few months after delivery.

“ am glad you came in,” Smith Thomas recalls a physician telling her, “because your heart was going to eventually stop pumping.”

Smith Thomas battled the illness for three years, until yet another health crisis, when a blood clot traveled to her lung. “ t felt like elephants were sitting on me,” she says. ver the next several weeks, Smith Thomas lost 6 pounds. n ctober 2 , doctors put her on a list for a heart transplant, which she received in Au-

gust 2 2 .

“ made it,” she said when she awoke from the nearly 2 hour surgery.

Just three weeks later, Smith Thomas would undergo open heart surgery to address a blood clot in her new heart.

“ made it,” she would sigh again. n the meantime, both Smith Thomas and her mother were doing their homework. Smith Thomas had taken part in a support group of women with PPCM, where she learned a lot more about the illness — but also had to deal with a lot of sadness, as some members of the group were dying. ne thing she learned was that PPCM falls more heavily on people of color. A study published in the Journal of the American Medical Association in 2 7 reported that African American women “presented with more severe cases of PPCM, recovered less fre uently and took at least twice as long to recover despite apparent ade uate treatment when compared with their non African American counterparts.”

Smith Thomas resolved that once she got better she would start a nonprofit that would educate, help and support women with PPCM, and urge others to become registered organ donors.

What she has only recently learned is that there is also research suggesting that lead poisoning may play a role in cardiovascular disease even years after exposure.

So it’s possible — though it would be hard to prove — that Smith Thomas dodged a lead poisoning bullet three decades ago, only to have it circle the Earth and take her down in the prime of her life.

Dr. Andrew White, a professor of pediatrics at Washington University School of Medicine who has treated children with lead poisoning, says it’s possible that lead poisoning can lead to cardiovascular issues later in life. But he added much more research would need to be done to demonstrate a definite link.

“ think it’s plausible. Lead shares some properties with other atoms and molecules that are important to the heart, like calcium,” White says. “Calcium and lead can certainly compete with each other. But in reading the Lancet journal article that reported the link, they were looking at ischemic heart disease, which is really like heart attacks and which are distinct from PPCM. So maybe there’s no direct correlation … but maybe there is.”

Parenting is a challenge

Whether it’s lead poisoning or other factors that contributed to her PPCM and conse uent heart transplant, this much is clear Ebony Smith Thomas can no longer work, nor be as active in her children’s lives as she once had been.

She is entitled to what the government offers to everyone. n Smith Thomas’ case, it’s a mixture of Medicare and Medicaid benefits, which paid for her transplant and a good deal of her medical care. She also receives food stamps. But it doesn’t make up for the lost income from the job she had to relinquish, nor does it pay for the deductibles attached to her health-care coverage.

Smith Thomas’ cousin, Chantel Neal, whom she calls “Fav,” put together a GoFundMe site for her

that to date has raised just over $1,000. In the meantime, on her own Facebook page, “EB’s Heart Journey,” Smith-Thomas keeps friends apprised of her journey and she promotes #letstalkppcm, a group that supports and informs mothers with the illness.

Her mom and dad, and her cousin Misha Marshall, help out with childcare, so that Ebony can focus on regaining her health and spend quality time with ClayClay, Khamari and her nieces as she is able.

“Because I have been in and out of the hospital for quite some time, I’m not always home. But I’m a parent. I want to stay in the loop,” Smith-Thomas says. “Whatever I could do to make my sons and nieces successful in whatever class that they are in, I’m going to do that. I’m that type of parent.”

Her support system also includes the Webster Groves School District. Both of her sons are participants in the region’s desegregation program. Smith-Thomas says she can’t say enough about the administrators, teachers and parents, who once having learned about her situation created workarounds for her children to get to school and participate fully in activities.

She says that when her younger son, Clayton, balked at taking a cab that the district provides for transportation to his school, administrators made sure to have a bus to take so that he could ride with other children.

When it comes to Khamari, Smith-Thomas singled out Webster Groves football coach Matt Buha for her most effusive praise. “I love coach Buha because he loves my boy,” she says.

Buha’s team is, so far, winless this season. But the coach manages to find his joy in other ways, and in particular his growing bond with Khamari, who plays offensive tackle for the Statesmen. Khamari stands 6 feet, 3 inches tall and weighs in at 320 pounds. Buha can’t wait to see how Khamari develops as a player. He is already certain Khamari will succeed as a leader.

“I am so lucky to have that young man on our team,” Buha says. “Khamari is one of those students who is pulling the best things out of the sport. He has learned at home to be responsible and accountable to his family, and Uncertain future

In mid-September, when we last spoke at length, Ebony SmithThomas was looking forward to attending Khamari’s upcoming game at Lindbergh High School. Her outings have been more frequent of late, but there’s always a measure of uncertainty concerning how they will unfold.

At various times over the spring and summer, she suffered episodes in which she would collapse as if in a trust fall. “Everyone learned to walk beside me, and there would be Clay-Clay trying to catch my head from hitting the ground,” she says.

Some new medication seems to have put an end to those episodes, but Smith-Thomas and her family have learned to live with uncertainty.

Even so, she looks ahead to some anniversaries she is hoping to celebrate. “I have a business plan I am putting together to start a nonprofit to bring awareness to PPCM,” she says. “I’m going to name it I Heart University.”

A year from now, Khamari will be filling out applications for college. Maybe some college football recruiters will come calling. ClayClay will be a first grader. Smith Thomas is determined to be present for them, whether it’s on the sidelines at a game, a school jamboree, a taekwondo class or a swimming lesson.

“When they are participating in an activity,” she says, “they are looking for me. I don’t care who shows up. They are looking for me.

“I live for myself, but I live and breathe for my boys.” n

Richard H. Weiss is cofounder of Before Ferguson Beyond Ferguson and also serves as executive editor for the nonprofit racial equity storytelling project.

Zach Bayly, a board member for Before Ferguson Beyond Ferguson, also contributed information for this story.

son, a nonprofit racial equity project, is telling the story of families in 63106 one by one over the course of the pandemic. You can find an archive of other family stories at beforefergusonbeyondferguson. org/63106-project/.

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