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Living Legacy

The enduring, troubling and miraculous story of Virginia's Henrietta Lacks.

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SONNY LACKS IS KNOWN for his smile. Wide and welcoming, it's a feature that others tell him he shares with his mother.

He wishes he knew that for himself, but he was only 4 when she died.

On a recent Monday afternoon, Sonny and his older brother, Lawrence, sit at a dining room table in Baltimore and examine sketches of what will be their mother's tombstone. They've never had enough money for one. Finally, after all these years, a gift will allow their mother to be remembered as they want her to be.

Lawrence looks at the images but says little. He doesn't like talking about the mother he lost when he was 16.

“Don't know why; I never could,” he says, taking off his glasses and rubbing his moist eyes. “I just can't.”

The course of their lives changed in 1951 when their mother visited what was then Johns Hopkins Hospital, just 20 minutes down the road from where her boys now live. It was there that doctors discovered her strange illness and removed mysterious cells from her body.

The sons are one legacy of Henrietta Lacks — a poor woman from the tobacco fields of south-central Virginia. The other is this: Her cells are still multiplying ferociously nearly six decades after her death. They have led to medical miracles such as the vaccine for polio and have produced millions of dollars in revenue for others.

The family's great loss has become the world's great gain.


 

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Hennie and her husband David, circa 1945, were raised by her grandfather in a two-story cabin that once served as slave quarters of their ancestors. Hennie's cousin Sadie Sturdivant says Hennie liked to dress nicely and wear pretty things.

HENRIETTA LACKS WAS born Loretta Pleasant on Aug. 1, 1920, in Roanoke. The boys aren't sure how she became Henrietta, which was shortened to Hennie after her mother's death when the girl was 4.

Hennie and her nine siblings were sent to live with aunts, uncles and cousins in the tiny farming town of Clover, about two hours southwest of Richmond near Chase City. Hennie landed with her grandfather, who also was raising one of her first cousins, David. They lived in what was called the “home house,” a two-story cabin built of hand-hewn logs and pegs that once was the slave quarters of their ancestors.

It looks toward the family cemetery, where the white relatives — Hennie's great-grandfather and great-uncles were plantation owners — are buried behind a row of boxwoods. The bushes separate their resting places from those of the family's black members, many of whom are in unmarked graves in a meadow.

The hundreds of acres surrounding the home house were, and still are, known as Lacks Town. Those living in nearly every dwelling dotting the tobacco fields were, and still are, kin.

Growing up, the cousins scared each other with tales about the cemetery and phantom dogs and pigs that roamed Lacks Town Road, which runs alongside the house and up a half-mile to where cousin Sadie Grinnan was born in 1928.

Sadie remembers Hennie as the most beautiful thing, with honey-colored skin, a round face and a smile that made boys act like fools.

Sadie says she was surprised when Hennie and David, who went by “Day,” started acting like a couple; they'd been raised like brother and sister. But Lawrence was born to them in 1935 and Elsie four years later. Elsie was as striking as her mother but was born different, what some called deaf and dumb.

Hennie and Day married in 1941, and the family left their life of farming tobacco to join the flood of blacks making their way to Baltimore and Washington, where wartime prosperity awaited in the shipyards and steel mills.

They were headed, they thought, to an easier life.

Sadie moved to Baltimore in the mid-1940s and often caught the No. 26 trolley to Turner Station, where Hennie had settled in as a housewife in the brick apartments built for the workers swelling the waterfront.

But Hennie missed the country and often piled the kids onto a bus for trips back to Clover.

Whether in Virginia or Maryland, she loved being a mom. Sadie watched her braid Elsie's long, brown hair and fret about the way the girl ran wild and darted off if someone wasn't looking.

Hennie could be as strict as she was sweet. After Sonny came along in 1947 and Deborah two years later, Lawrence was in charge of hand-washing the babies' diapers. If they weren't clean enough, Mama made him do it again.

About the time their fifth child, Joe, was born in 1950, Hennie and Day decided it was best to put Elsie in Crownsville State Hospital, once known as the Hospital for the Negro Insane of Maryland.
It broke Hennie's heart, “but she would visit her all the time,” Sadie says.

A few months later, Hennie shared a secret. She'd started bleeding even though it wasn't her time of the month. And one morning she took a bath and discovered something. She told Sadie: “I feel a lump.”

 

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Henrietta Lacks' sons, Lawrence Lacks, 75, and David “Sonny” Lacks, 62, of Baltimore, plan to place a headstone on their mother's unmarked grave in her hometown of Clover on Memorial Day weekend.

Dr. Howard Jones was the gynecologist on duty Feb. 1, 1951, in the outpatient center at Johns Hopkins when Henrietta Lacks came in. Jones, who with his wife later founded the Jones Institute for Reproductive Medicine in Norfolk, examined her and saw something so peculiar it would stay with him for decades: A glistening, smooth growth that resembled purple Jell-O.

It was about the size of a quarter at the lower right of her cervix, and it bled easily when touched.

Jones thought it might be an infection and tested Lacks for syphilis, but the results came back negative. He ordered a biopsy — cutting away a small portion of the tissue — and within 48 hours had the diagnosis: cancer.

When Lacks returned for treatment eight days later, a second doctor sliced off another sliver of her tumor. Following the practice of the day, Lacks was not told.

Radium capsules were packed around her cervix to kill the cancer cells, and she later was released from the hospital.

At home, Lacks didn't tell anyone about her illness.

She continued to take care of her babies, two still in diapers, visit Elsie when someone would drive her, and cook her husband his favorite foods, such as white pinto beans.

She regularly returned to Johns Hopkins for treatment, but the cancer cells were swarming faster than the radium could kill them. It was becoming difficult for her to hide the pain. Cousins would enter the house and hear her upstairs, wailing, “Oh, Lord, oh, Lord, I can't get no ease! Jesus, help me, Jesus!”

On Aug. 8, shortly after her 31st birthday, she was readmitted to Johns Hopkins for what would be the last time.


 

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Dr. Howard W. Jones Jr. discusses treating Henrietta Lacks while he was at Johns Hopkins in Baltimore in the early 1950s.

JUST AFTER MIDNIGHT on Oct. 4, 1951, Henrietta Lacks died. Doctors performed an autopsy that revealed firm white lumps studding her body, her chest cavity, lungs, liver and kidney. Her bladder appeared to be one solid tumor.

The cells seemed uncontrollable.

Sonny's only memory of his mother is from her funeral in Clover.

She was buried in an unmarked grave near the home house, and he recalls how rain poured from the sky, as though heaven were weeping for Hennie.

Back in Baltimore, cousins came to help the widowed Day, who was trying to pull shifts at the shipyard and manage his three youngest children. Visits to Elsie became rarer.

Lawrence helped out, but he soon left to join the Army. Two relatives, one the family would later describe as evil, moved in to care for his brothers and sister.

Sonny recalls being beaten for no reason and having little food, maybe a biscuit, each day. The cabinets were locked so the kids wouldn't try to get more.

As they grew older, the children spent summers in Clover, plucking and stringing tobacco as their mom had done. They kept the abuse to themselves. Stoic, like their mom.

After his Army stint, Lawrence returned to Baltimore, married and took in his brothers and sisters when their dad became ill. Elsie died at Crownsville in 1955. The family learned years later that she had been abused and may have had holes drilled in her head during experiments.

No one in the family talked about Hennie. Lawrence and his father didn't want to, and the younger kids didn't ask. Part of the Clover upbringing was that children didn't bother grown-ups with a lot of questions.

Henrietta's children had children of their own, and they, too, didn't ask about Grandma. It was as though she hadn't existed.

 

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James Sturdivant, 78, visits an old house made of hand-hewn logs where Henrietta Lacks grew up. Sturdivant mows the grass at the small cemetery where Lacks is buried just a short distance away.

Then, in the early 1970s, the family got a call.

Researchers wanted Sonny and other family members to give blood samples so more could be learned about their mother's genetic makeup. The family wanted to know why.

Part of their mother, they were told, was alive and growing more than 20 years after her death.

Tissue from their mother's second biopsy in 1951 had been given to Johns Hopkins researcher Dr. George Gey, who for years had been trying unsuccessfully to grow human cells outside the body in his search for a cancer cure.

Technicians expected Lacks' cells to do what previous samples had done: nothing, or perhaps live a few days then die. Instead, the cells multiplied in petri dishes, spreading and piling atop one another. Uncontrollably.

On the day Lacks died, Gey appeared on a television program called “Cancer Can Be Conquered.” He held Lacks' cells in a bottle close to the camera and discussed his scientific breakthrough: the first human cell line ever grown.

Gey called the cells “HeLa” — the first two letters of Henrietta Lacks' first and last names — and gave samples to other researchers around the country. Cancer cells work enough like normal cells that doctors could test and probe them and unlock their secrets.

Jonas Salk at the University of Pittsburgh Medical School infected HeLa cells with the polio virus and studied the reaction. By 1955, he had created a vaccine that helped nearly eradicate the crippling disease.

Companies used HeLa to test cosmetics. Researchers put flasks of HeLa near atomic test sites to measure the effects of radiation on human cells. Scientists sent HeLa into space with white mice to determine what happened to human flesh at zero gravity. HeLa helped scientists discover genetic mapping.

The cells multiplied so rapidly that they often contaminated other laboratory samples. In the 1970s, Soviet researchers thought they'd discovered a virus that caused cancer, but it turned out HeLa cells had permeated the Iron Curtain.

The revelation led to improvements in the way labs handle cells and cultures.

Other cell lines were being born, but HeLa cells had become the gold standard. They shipped and stored well, and were incredibly robust. Jones said most cells can duplicate themselves in a culture in 36 hours; HeLa doubles in 24. The chromosomes in most cells shorten with each duplication until the cells can't divide anymore. Not HeLa.

Doctors still aren't sure why. Jones, 99, said recently: “They are still that unique.”


 

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Sadie and James Sturdivant walk toward a small cemetery off Lacks Town Road in their hometown of Clover to visit the unmarked grave of Sadie's cousin, Henrietta Lacks.

OVER THE YEARS, the Lacks family became used to the occasional phone calls from reporters and researchers.

They told what little they knew to Rolling Stone and Jet magazines and to the BBC.

What family members couldn't get used to was what had happened to Hennie.

They were angry at Johns Hopkins because they felt the hospital removed her cells without her permission.

They were bewildered by all the scientific jargon and how researchers took their blood but did not follow up or explain the results, they said. None of the children have developed their mother's aggressive cancer.

They were enraged by biomedical companies that produced the cells like they were printing money and sold them for millions, while many in the family couldn't afford health insurance.

Cousin Sadie Grinnan, now Sadie Sturdivant, 81, lives in Nathalie, near Clover, and is bothered by it, too.

“These other people,” she says, “are making billions and billions.”

What was hardest for Hennie's children to deal with was that so many people knew so much about their mother, while they knew so little. “That's what hurts,” Sonny says.

Now he's looking for closure. It began in earnest with the release earlier this year of Rebecca Skloot's book, “The Immortal Life of Henrietta Lacks.”

The book recounts the family's struggle, the science and the ethical implications surrounding the use of the cells.

Sonny's sister Deborah had worked closely with the author but died last May from heart disease. Deborah, who was 59, went to her grave wanting to honor her mother.

Sonny is determined to fulfill her wish.

The family is working with a lawyer to get a handle on all things Henrietta. For example, Sonny recently heard that a group in New York is holding a Henrietta Lacks race, and he wondered how people could do that without the family's permission. He and his brothers don't have the time or know-how to answer those kinds of questions.

Lawrence, 75, rehabilitates houses for a living. Sonny, 62, is a truck driver who often picks up his grandkids in the afternoons. He helps out his younger brother, Joe, who changed his name to Zakariyya Abdul Rahman and goes by Abdul. At 59, Abdul has problems with his legs and can't get around easily.

The family has pooled its money to buy headstones for their father, who died in 2002 and is buried in Baltimore, and for Elsie, whose body was moved to a grave near her mother's in Clover.

The Morehouse School of Medicine in Atlanta has volunteered to pay for Hennie's tombstone, and Skloot will buy one for Deborah, who was buried in Baltimore. The author also has established a scholarship fund for the family.

In a ceremony in October, Johns Hopkins University will honor the contributions of Henrietta Lacks and others who have participated in scientific research.

Administrators say they think the medical center's role in Lacks' story often has been misrepresented. Dr. Daniel Ford, director of the Institute for Clinical and Translational Research at Johns Hopkins, says the hospital's critics are applying modern rules to a different era.

Patient consent, now a medical standard, wasn't even considered in 1951. Ford notes that Lacks' tissue was given away by researcher Gey and that the hospital never patented HeLa cells or sold them commercially.

“Gey's whole goal was to find a human cell line that would reproduce,” Ford says. “It would be a platform, a model that scientists could learn human cell function from.”

Gey had no idea what would happen.

Over the years, HeLa cells have multiplied to the point that they could weigh more than 20 tons, or 400 times Lacks' adult body weight. According to the U.S. Patent and Trademark Office, there are close to 11,000 patents involving HeLa. The cells are so prevalent that they can be ordered by the vial on the Internet.

 

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Aiyana Rogers, 11, is happy that the world knows of her great-grandmother, Henrietta Lacks. She looks at family photos in the dining room of her grandmother's home in Baltimore.

The family members try to concentrate on all the good that's come from them. On Memorial Day weekend in Lacks Town, they'll install their mother's headstone, made of granite with a rose-colored tint that hints of flowers — sweet, like Hennie, and growing, like her cells.

Her grandchildren came up with the words that will be carved into the stone:

“In loving memory of a phenomenal woman, wife and mother who touched the lives of many. Here lies Henrietta Lacks (HeLa). Her immortal cells will continue to help mankind forever.”

Aiyana Rogers, one of Sonny's granddaughters, flops down at the dining table in Baltimore where the Lacks brothers talk about the memorial. She brings out a family portrait and Skloot's book, which she has started to read.

Aiyana's intrigued by the science and by the cures, but mostly she's just proud of her great-grandmother.

“I just like that the world knows her now,” the 11-year-old says, with a wide, welcoming smile. “And that she is the most important woman in the world.”

Denise Watson Batts is a Norfolk native who's been a staff writer with The Virginian-Pilot for 19 years.

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