Up until the day she died in 2017, some of Rose Marie Bentley’s organs were out of place, something many people didn’t notice.
Her liver, stomach and other abdominal organs were essentially “mirrored” (or on the “wrong” side), a discovery medical students made in spring 2018 after dissecting her body in class. Her heart, however, was in the correct place.
Instructors at OHSU Anatomical Services Center in Portland had never seen this type of “organ inversion,” and the discovery was fascinating for students, too.
Cameron Walker, an assistant professor of anatomy at OHSU, told Global News after seeing Bentley’s organs, he knew he had to do more research.
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“It [was] a mix of curiosity and fascination [and] a desire to look into what immediately appeared to be something of a medical mystery.”
Because Bentley’s body was donated to Walker’s class, he was unable to verify the donor’s name. He added when you donate a body to science, these personal details are left out. But when he saw the organs himself, he wanted to know more about the donor’s medical history.
Rose Marie Bentley’s abdominal organs were a mirror image of typical human anatomy, meaning they were transposed right to left. Photo: Lynn Kitagawa for OHSU
Walker said his students initially discovered something was off when they looked at Bentley’s chest cavity. Students found blood vessels around her heart that seemed out of place.
Rose Marie Bentley, shown here in an undated photo. Photo courtesy of Bentley family
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“There was a large blood vessel that most of us don’t have. It was coursing along towards the right atrium,” he said. “That immediately tipped the students off that something was unusual with this individual.”
Her rare condition
Next the students and instructors moved on to the digestive system and that’s when things became official: Bentley had a condition called situs inversus with levocardia, he explained. The condition meant some of her essential organs were “mirrored.”
According to OHSU, the condition occurs about once in every 22,000 births (Walker said this stat is based on U.K. data) and is often linked with life-threatening cardiac ailments and other abnormalities.
But Bentley somehow lived her whole life without any of these ailments, making her case extremely rare.
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The school added she may have also been the oldest-known person to have this condition — there have been two other recorded cases of older patients, both who lived in their 70s.
Walker added only one in 50 million people who are born with Bentley’s specific condition live long enough to enter adulthood.
Bentley herself and her children and family members were unaware she had this rare condition.
Cam Walker (left) and his colleague Mark Hankin researched a case detailing a rare condition. Photo: OHSU/Kristyna Wentz-Graff
“My mom would think this was so cool,” daughter Louise Allee said in a statement to OHSU.
“She would be tickled pink that she could teach something like this. She would probably get a big smile on her face, knowing that she was different, but made it through.”
After looking into her medical history, Walker also discovered Bentley had some surgeries. After having her gallbladder and uterus removed, doctors did not notice her organs were in an unusual place.
But when she had her appendix removed, a doctor noted that it had been on the left side instead of the right. Again, nobody had diagnosed her condition.
Donating a body to science
For Walker, this experience has highlighted the importance of donating a body to science and allowing students to learn first-hand.
“It was certainly one teaching moment after another with this group,” he added. “That message is clear now to them that we’re all a little bit different under the skin… treat patients as individuals and tailor their treatment a little bit.”
It has also been a memorable teaching moment.
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“This is exactly the kind of amazing teaching moment that you provide when you do that and the students forget it.”
He added since the donor’s story went public, some people with the condition have been reaching out to him, asking for advice and sharing their own stories.
“Finding other individuals who have some of these variations might enable me to track down the genetic and the heritable basis for this anomaly and I would like to report on that.”
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