Ben Carson’s surgeries separated twins, didn’t always save them
He was quiet, prayerful, and bold — but some felt he pushed ethical bounds
By Tracy Jan Globe Staff,November 13, 2015, 4:45 p.m.
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This article is behind a paywall, but a member of my household subscribed in 2015 so I'm including the downloaded article
https://www.bostonglobe.com/news/politics/2015/11/13/siamese-twin-separation-that-launched-ben-carson-fame-ended-poorly-for-twins/miZSU7XaINfDWFXWsfYLDO/story.html
BALTIMORE — Sixteen hours into the marathon operation, the moment came to separate the seven-month-old twins joined by a blood vessel at the back of their brains. Everyone in the operating room assumed Dr. Ben Carson, then director of pediatric neurosurgery at Johns Hopkins Medicine, would do the honors of severing the thin blue vein that last connected the babies.
But the unassuming young surgeon handed the knife over to his mentor, Dr. Donlin Long, the neurosurgery chief at the time.
“He gave me the opportunity to take over and do the operation and take all the credit,” Long recalled in an interview with the Globe. “I thought about it. If everything worked out well, it could make his career. If it didn’t, it could destroy it.”
Long handed the knife back. The German twins survived the risky procedure. The pioneering surgery in 1987 catapulted Carson into medical stardom.
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Over the course of his three-decade-long career here in Baltimore, Carson became known for tackling highly controversial surgeries at the frontier of science and the boundaries of ethics. He was known for taking on cases rejected by other surgeons as too risky. He was involved in a total of five attempts to separate conjoined twins — directly participating in four and serving as a consultant on a fifth. All faced a desperate prognosis without surgery — severe limitations or early death.
But even after surgery, only one pair went on to lead normal lives, according to Johns Hopkins.
In interviews with more than half a dozen doctors, nurses, and patients who knew Carson at varying stages of his 36-year career at Johns Hopkins, a
consistent portrait emerged of a calm, collected man, even — or especially — in the face of medical crises and angry families of patients.
Carson was so disarmingly quiet and low-key that colleagues and patients nicknamed him “Gentle Ben,” after a 1960s children’s TV series about a bear by the same name.
Carson dedicated two chapters in his 1990 autobiography, “Gifted Hands,” to recounting the tension and suspense surrounding the twins’ separation that made him famous in 1987 —
but he did not acknowledge the depths of the profound disabilities the children ended up with.
His wife, Candy Carson, wrote the book’s introduction, painting Carson as the hero of the chaotic operating room scene that historic day: “The exhausted primary neurosurgeon who had devised the plan for the operation was a ghetto kid from the streets of Detroit.”
Despite overcoming 50-50 odds of surviving the surgery, Benjamin and Patrick Binder did not go on to live normal lives or anything close to it — a fact Carson did not detail in his celebrated book, saying he was limited by an exclusive contract between the boys’ parents and a German magazine until the twins turned 18.
Carson, in another book based on “Gifted Hands” — his 2015 “My Life,” which his campaign sends to supporters — portrays an even more optimistic picture of the surgery than in his first telling.
“I hadn’t expected them to survive 24 hours, yet here they were, progressing beyond my wildest dreams,” Carson wrote in “My Life,” recounting the moment, 10 days after surgery, when both boys opened their eyes. He then thanked God for having a hand in the miracle.
In a 1988 Bunte magazine story, Carson predicted that one of the twins would be crawling soon, while the other would need to overcome the effects of an event that occurred after the surgery when he nearly suffocated. “Both are more advanced now than we were hoping they would be,” Carson said.
But according to news media accounts two years after the surgery, one boy was discharged from the hospital with signs of severe neurological damage and remained in a vegetative state; the other was developmentally delayed.
Carson at the time acknowledged the surgery’s shortcomings. “In a technological ‘Star Wars’ sort of way, the operation was a fantastic success,” he told the Associated Press in 1989. “But as far as having normal children, I don’t think it was all that successful.”
Carson’s campaign did not respond to repeated requests for an interview.
The twins’ mother, Theresia Vosseler, described in a subsequent interview with a German magazine being racked with guilt for seeking the separation surgery that left her sons so impaired she had to send them to live in an institution.
In 1993, Vosseler told Freizeit Revue that she flew to Baltimore with “a healthy, happily babbling baby bundle and came back to Ravensburg with two lifeless, soundless, mentally and physically most severely damaged human bundles.”
“I will never get over this,” said a bitter Vosseler. “Why did I have them separated? I will always feel guilty. . . I don’t believe in a good God anymore.”
At age 7, Benjamin and Patrick Binder could not sit on their own, lift their limbs, make any words, or swallow food or liquids without help, the magazine said. They couldn’t even cry. They were still in diapers, and their condition deteriorated from one year to the next, said Vosseler, whose second husband would bring the boys home to visit on weekends.
Vosseler said she had divorced the twins’ father, Josef Binder, in 1990 because he could not handle the stress of taking care of the disabled children and became a violent alcoholic.
Theresia Vosseler, now Theresia Heymann, declined to comment when approached by a reporter last week at her home in the medieval city of Ravensburg in southwest Germany. Her brother, Peter Parlagi, told a reporter in a brief phone interview that one of the twins, Patrick, has died; he declined further comment. Her second husband and other family members did not respond to multiple messages.
A Johns Hopkins spokeswoman said the hospital has not had contact with the family since they returned to Germany in 1988, seven months after the separation surgery.
The hospital released an excerpt of a new book on the history of neurosurgery at Johns Hopkins, to be published Nov. 18, that includes a section on the Binder twins and interviews with Carson.
Without the surgery, the twins would have been condemned to a terrible existence, Carson told an interviewer for the book. But ultimately, the author concluded, “both twins had severe neurological problems, their parents separated, and they were institutionalized as wards of the state. They were never two normal children.”
Carson again courted controversy in 2003 when he agreed to participate in the separation of the Bijani sisters, 29-year-old Iranian twins. It was the first known attempt to separate adult twins joined at the head.
They died on the operating table in Singapore after massive blood loss, a scenario that other surgeons who had refused to do the surgery had predicted. Their skulls were too thick; their brains too intimately joined.
“The German team refused to do it because doctors don’t participate in interventions that would lead to death,” said Alice Dreger, a bioethicist who wrote the 2005 book “One of Us: Conjoined Twins and the Future of Normal,” in an interview with the Globe.
“They found a happier story with Dr. Carson,” Dreger said. “He repeatedly told the press there was a 50 percent chance one of them would be disabled or die from surgery. It would have been more accurate to tell them they would die.”
Despite the losses, Carson has said he believes undertaking such operations is essential.
“A lot of younger guys are learning a lot, pushing on to the next border, which is how progress is made,” Carson told Johns Hopkins magazine in 2004. “We all act as steppingstones.”
Long, now 81 and officially retired from Hopkins, told the Globe that there were no obvious signs of neurological damage before the Binder operation, but he said the twins were so young it was too early to tell. He said Carson and another surgeon led Hopkins medical staff in numerous ethical discussions about the surgery — “whether it could be done or should be done. Ben thought it was possible, but he was searching for others’ opinions. It was a big team decision.”
To this day, several patients’ relatives praise Carson for his courage to perform risky operations in an effort to give their loved ones a chance at a normal life.
In 2004, Carson separated the Block twins, 1-year-old German girls joined at the head. One twin, Tabea, died shortly after the separation. The other, Lea, sustained neurological damage. Reached at her home in Lemgo, Germany, their mother, Nelly Block, told the Globe that despite the outcome, she remains grateful to Carson and does not regret the surgery.
“Dr. Carson said if we didn’t separate them, their lives would be very short, only two years, maybe,” Block said.
Lea is 12 now and attends a school for the blind. She chatters constantly — “the whole day,” her mother said — and likes to sing children’s songs and listen to classical music. She walks with a limp because her left side was partially paralyzed after the operation. Her mind is not that of a typical 12-year-old, but she understands most of the things her parents say to her.
“She is a really happy girl,” Block said. “Life for her is OK.”
Other families recall Carson routinely directing them to pray before surgeries. Many of the cases were so difficult that patients had a good chance of dying in the operating room. Carson would repeatedly inform them of the potential complications and inquire at every step whether they still wanted him to proceed.
“He doesn’t try to candy-coat anything. He knows how to calm parents who are very upset,” said Theresa Francisco, whose daughter Carson operated on in 1985 when she was 4 years old because her rare disease, Rasmussen’s encephalitis, caused her to have 100 to 200 seizures a day.
Without surgery, her disease would have led to permanent paralysis, mental retardation, and death, Carson wrote in his book.
Carson told Francisco and her husband that their daughter could bleed to death on the operating table, or, if she survived, become paralyzed, lose her ability to speak, and eventually end up in an institution. The Franciscos, who had exhausted all other medical avenues, were undeterred. Carson asked them to pray.
“He told us that God guides his hands during surgeries,” Francisco said.
Carson removed half the girl’s brain — a controversial procedure he said he had never before performed — and her seizures stopped, according to Carson and the girl’s mother.
Francisco said her daughter had learning disabilities and no short-term memory after the surgery. But after extensive therapy, at age 34 she is living on her own in Big Lake, Minn., and working at a local deli.
Susan Warnick Breslin, a former pediatric neurology nurse at Johns Hopkins who has known Carson for 30 years, handpicked Carson as her husband’s neurosurgeon in 1986. Craig Warnick suffered from debilitating tumors as a result of Von Hippel-Lindau disease.
Carson operated on Warnick close to a dozen times as new tumors grew. A devout Christian herself, Warnick Breslin said she liked the fact that Carson never took credit for successful surgeries. “He always told his patients it was by the grace of God,” she said.
In 1996, Craig Warnick developed another tumor on his brain stem. Carson broke the news gently, telling the couple there was no way he could operate in that area again and have Craig turn out OK. Warnick Breslin was convinced she could get Carson to change his mind about the operation, just as she’d done in the past. She decided to press him after the holidays.
Two days after Christmas, at 11 at night, Craig felt compelled to walk out into the cold to check the mail even though he was feeling ill. In the mail was a letter from Carson. His wife read the typed, one-page letter aloud.
“It said even though things are really difficult right now for you, I want you to know that I am praying for you,” she recalled.
Hours later, Craig experienced a brain bleed. He never regained consciousness and died five days later in the hospital. Carson delivered a eulogy at the funeral.
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