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Denmark’s mind assortment: The darkish and mysterious origins of almost 10,00 brains in a basement

Editor’s Note: Watch the particular documentary, “World’s Untold Stories: The Brain Collectors,” November 12-13 on CNN International.



CNN
 — 

For years, there had been whispers. Rumors swirled; tales exchanged. It wasn’t a secret, but it surely additionally wasn’t overtly mentioned, including to a legend nearly too unbelievable to consider.

Yet those that knew the reality needed it out.

Tell everybody our story, they stated, concerning the brains within the basement.

As a toddler, Lise Søgaard remembers whispers, too, although these had been totally different – the household secret form, hushed as a result of it was too painful to talk it out loud.

Søgaard knew little about it, besides that these whispers centered on a member of the family who appeared to exist solely in a single {photograph} on the wall of her grandparent’s home in Denmark.

The little lady within the image was named Kirsten. She was the youthful sister of Søgaard’s grandmother, Inger – that a lot she knew.

“I remember looking at this girl and thinking, ‘Who is she?’ ‘What happened?’” Søgaard stated. “But also this feeling of a little bit of a horror story there.”

As she grew into maturity, Søgaard continued to marvel. One day in 2020, she went to go to her grandmother, now in her mid-90s and dwelling at a care dwelling in Haderslev, Denmark. After all that point, she lastly requested about Kirsten. Almost as if Inger had been ready for that very query, the floodgates opened, and out poured a narrative Søgaard by no means anticipated.

Kirsten Abildtrup was born on May 24, 1927, the youngest of 5 brothers and her sister, Inger. As a toddler, Inger remembers Kirsten as quiet and good, the 2 sisters sharing a detailed bond. Then, when Kirsten was round 14 years outdated, one thing started to alter.

Kirsten skilled outbursts and extended bouts of crying. Inger requested her mom if it was her fault, typically feeling that method as a result of the 2 women had been so shut.

“At Christmas, they were supposed to go on a visit to some family members,” Søgaard stated, “but my great-grandmother and father, they stayed home and sent all of their children away except for Kirsten.”

When they acquired again from that household go to, Søgaard stated, Kirsten was gone.

It was the primary of many hospitalizations, and the beginning of an extended and painful journey that may finally finish in Kirsten’s loss of life.

The prognosis: schizophrenia.

Kirsten was first hospitalized in the direction of the tip of World War II, when Denmark and the remainder of Europe had been finally on the verge of peace.

Like so many locations, Denmark was additionally grappling with psychological sickness. Psychiatric establishments had been constructed throughout the nation to offer look after sufferers.

Doctors prepare a patient for electroshock therapy at Augustenborg Psychiatric Hospital in Denmark, 1943.

But there was restricted understanding of what was occurring within the mind. The similar yr peace got here to Denmark’s doorstep, two docs working within the nation had an thought.

When these sufferers died in psychiatric hospitals, autopsies had been routinely carried out. What if, these docs thought, the brains had been eliminated – and stored?

Thomas Erslev, historian of medical science and analysis guide at Aarhus University, estimates that half of all psychiatric sufferers in Denmark who died between 1945 and 1982 contributed – unknowingly and with out consent – their brains. They went to what turned often known as the Institute of Brain Pathology, related to the Risskov Psychiatric Hospital in Aarhus, Denmark.

Doctors Erik Stromgren and Larus Einarson had been the architects. After roughly 5 years, stated Erslev, pathologist Knud Aage Lorentzen took over the institute, and spent the subsequent three many years constructing the gathering.

Dr. Larus Einarson, shown here teaching a class, was one of the co-founders of the brain collection at the Institute of Brain Pathology.

The remaining tally would quantity to 9,479 human brains – believed to be the most important assortment of its form wherever on this planet.

In 2018, pathologist Dr. Martin Wirenfeldt Nielsen acquired a name. The mind assortment, as it could come to be identified, was on the transfer.

An absence of funding meant it may not keep in Aarhus, however the University of Southern Denmark within the metropolis of Odense had provided to choose up the mantle. Would Wirenfeldt Nielsen be fascinated about overseeing it?

Pathologist Dr. Martin Wirenfeldt Nielsen now oversees the brain collection, housed in Odense, Denmark.

“I’d sort of heard of it in the periphery,” Wirenfeldt Nielsen recalled. “But my first real knowledge about the vast extent of it was when they decided to move it down here … (because) how do you actually move almost 10,000 brains?”

The yellowish-green plastic buckets housing every mind, preserved in formaldehyde, had been positioned into new white buckets that had been sturdier for the transport, and hand-labeled in black marker with a quantity. And then the brains, give or take a number of (nobody is aware of the place bucket #1 is, for instance) made their solution to their new dwelling in a big basement room on the college’s campus.

“The room wasn’t actually ready when they moved it down here,” Wirenfeldt Nielsen stated. “The whole collection was just standing there, buckets on top of each other, in the middle of the floor. And that’s when I saw it for the first time … That was like, okay, this is something I’ve never seen before.”

Eventually, the almost 10,000 buckets had been positioned on rolling cabinets, the place they continue to be immediately – ready – representing lives, and a variety of psychiatric problems.

There are roughly 5,500 brains with dementia; 1,400 with schizophrenia; 400 with bi-polar dysfunction; 300 with melancholy, and extra.

What separates this assortment from some other on this planet is that the brains collected in the course of the first decade are untouched by trendy medicines – a time capsule of types, for psychological sickness within the mind.

“Whereas other brain collections … (are) maybe specified for neurodegenerative diseases, dementia, tumors, or other things like that – we really have the whole thing here,” Wirenfeldt Nielsen stated.

But it has not been with out controversy. In the Nineties, the Danish public acquired wind of the gathering, which had been sitting idle since former director Lorentzen’s retirement in 1982.

It would kick off one of many first main moral science debates in Denmark.

A historical past of The Brain Collection

1945

The Institute of Brain Pathology is based, related to the Risskov Psychiatric Hospital in Aarhus, Denmark

Risskov, pictured right here within the early 1900s.

Credit: Museum Ovartaci

1945-1982

Nearly 9,500 brains are collected with out permission from deceased psychiatric sufferers throughout the nation

Brains had been collected and despatched from Danish hospitals, together with Rigshospitalet (pictured) in Copenhagen.

Credit: Jesper Vaczy/Medical Museum

1982

The head of the mind assortment, Knud Aage Lorentzen, retires. Nobody takes his place, and the gathering sits untouched in a basement

The brains, proven right here of their authentic yellow buckets, would stay largely untouched for greater than 20 years.

Credit: Hanne Engelstoft

1987

The Danish Council of Ethics is established

The Council of Ethics is an impartial group fashioned to advise the Danish parliament (pictured right here in 2016) on moral issues.

Credit: olli0815/iStock/Getty Images

1991

After the Council of Ethics says the brains can be utilized with sure restrictions in place, SIND (Denmark’s nationwide affiliation for psychiatric well being) calls for the brains be buried – sparking one of many first main moral science debates in Denmark

Some items of mind materials are preserved in paraffin wax.

Credit: Hanne Engelstoft

2005

Danish scientist Karl-Anton Dorph-Petersen takes over the gathering’s day by day upkeep at Aarhus

Karl-Anton Dorph-Petersen helped revive and protect the gathering within the mid-2000s.

Credit: Hanne Engelstoft

2006

The Council of Ethics goes towards political and non secular calls for by ruling it’s ethically sound to make use of deceased psychiatric affected person brains for analysis with out getting the consent of kinfolk. This time, SIND agrees

The assortment consists of affected person information and tissue preserved on slides, corresponding to these.

Credit: Hanne Engelstoft

2017-2018

An absence of funding threatens the brains, and the gathering is saved by transferring it to Odense, the place Dr. Martin Wirenfeldt Nielsen takes over

The brains had been put into new white buckets to maneuver to Odense, the place they continue to be safely saved on rolling cabinets.

Credit: Samantha Bresnahan/CNN

Source: Thomas Erslev, historian of medical science

Graphic: Woojin Lee, CNN

“There was a discussion back and forth, and one position was that we should destroy the collection – either bury the brains or get rid of them in any other ethical way,” stated Knud Kristensen, the director of SIND, the Danish nationwide affiliation for psychological well being, from 2009 to 2021, and present member of Denmark’s Ethical Council. “The other position said, okay, we already did harm once. Then the least we can do to those patients and their relatives is to make sure that the brains are used in research.”

After years of intense debate, SIND modified its place. “All of a sudden, they were very strong proponents for keeping the brains,” Erslev stated, “actually saying this might be a very valuable resource, not only for the scientists, but for the sufferers of psychiatric illness because it might prove to benefit therapeutics down the line.”

“For (SIND),” Kristensen stated, “It was important where it was placed and to make sure that there would be some sort of control of the future use of the collection.”

By the time it moved to Odense in 2018, the moral debate was largely settled, and Wirenfeldt Nielsen turned caretaker of the gathering.

Just a few years later, he would get a message from Søgaard. Was it doable, she requested, that he had a mind there belonging to a girl named Kirsten?

In the seek for what occurred to her nice aunt Kirsten, Søgaard realized there have been clues throughout her. But piecing collectively what precisely had occurred to her grandmother’s sister was gradual, stuffed with lifeless ends and false begins.

Yet she was enthralled, and started formally reporting her journey for Kristeligt Dagblad, the Copenhagen-based newspaper the place she labored – finally bringing it to mild in a collection of articles.

At one level, Søgaard determined to deal with a single phrase her grandmother had informed her, the identify of a psychiatric hospital: Oringe.

“I opened my computer and I searched for ‘Oringe patient journals,’” she stated. After placing in a request via the nationwide archives, “I got an email that said, ‘Okay, we found something for you, come have a look if you want.’ … I felt this excitement … like, she’s out there.”

Journalist Lise Søgaard made it her mission to find out what happened to her grandmother's little sister, Kirsten -- a journey that would take her places she never imagined. She shared that experience with CNN's Dr. Sanjay Gupta at her home outside Copenhagen in April 2022.

That pleasure was short-lived. At the nationwide archives, they positioned a principally empty file in entrance of her. It wasn’t a lot to go on, but it surely confirmed Kirsten’s prognosis of schizophrenia.

Without one other strong lead, Søgaard questioned the place to go subsequent. Then, nearly in passing, as they seemed via outdated household images collectively, her mom stated one thing that she’d by no means heard earlier than.

“She said, ‘You know, they might have kept her brain,’ and I said, ‘What?!’” Søgaard informed CNN’s Dr. Sanjay Gupta at her home outdoors of Copenhagen. “And she told me what she knew about the brain collection.”

At age 95, Søgaard’s grandmother, Inger, may nonetheless clearly image visiting her little sister Kirsten within the hospital, after the signs she first began experiencing at age 14 continued to progress.

Upon one go to, Inger remembered, “(Kirsten) was lying there, completely apathetic. She was not able to speak to us. … Another day we went to visit her, and she was gone from her room. They told us she had thrown a glass at a nurse, and they had sent her to the basement, to a room where they (restrained) her with belts. And we were not allowed to go in, but I saw her through a hole in the door; she was lying there, strapped up.”

One floor of the Oringe psychiatric hospital is now a museum, which displays medical treatments and patient rooms such as this one.

Inger felt confused and scared, she stated, as a result of it may have been anybody, together with her, which may get “sick.”

At Sankt Hans, one of many largest and oldest psychiatric hospitals in Denmark, Dr. Thomas Werge walks the identical grounds he did as a toddler, when his personal grandmother was hospitalized there. Now, he runs the Institute for Biological Psychiatry there, the place he and his workforce examine the organic causes that contribute to psychiatric problems.

A 2012 examine discovered that roughly 40% of Danish girls and 30% of Danish males had acquired remedy for a psychological well being dysfunction of their lifetimes – although Werge estimated that quantity would “almost certainly” be larger if the identical examine was executed immediately. (By comparability, that very same yr, lower than 15% of US adults acquired psychological well being providers.) Among the opposite Nordic nations, together with Sweden and Norway, Werge stated the numbers can be akin to Denmark’s, as there are “similar [universal] health care systems and standards for admission.”

“Mental (health) disorders are all over,” he added. “We just do not recognize this when we walk around among people. Not everybody carries their pain on the outside.”

For schizophrenia, there aren’t any blood exams or biomarkers to indicate its presence; as a substitute, docs should rely solely on a scientific examination.

Schizophrenia presents itself in what the World Health Organization (WHO) calls “significant impairments in the way reality is perceived,” inflicting psychosis that may embody delusions, hallucinations, disorganized habits or ideas, and excessive agitation.

Roughly one in 300 persons are affected by schizophrenia worldwide, in response to the WHO, however lower than one-third of these will ever obtain specialist psychological well being care.

denmark cemetery of the brainless spc intl_00013202.png

Visiting a ‘cemetery of the brainless’ in Denmark


02:10

– Source:
CNN

The normal remedy because the mid-Nineteen Fifties has been anti-psychotic medicine, which usually work by manipulating dopamine ranges: the mind’s reward system. But, Werge stated, it might include a price.

“Schizophrenia and psychosis are linked to creativity,” he stated. “So, when you try to inhibit the psychosis, you also inhibit the creativity. So, there’s a price for being medicated … Whatever causes all these problems for humans is also what makes us humans in the good sense.”

Though there haven’t been many vital scientific breakthroughs concerning an understanding of the illness, researchers have confirmed that genetics and heritability play a big function.

According to Werge, the heritability estimate is as excessive as 80% – the identical as peak. “It’s not a surprise to people that if you have very tall parents … there’s a lot of genetics in that,” he stated. “The genetic component is equally large in most of the mental disorders actually.”

Those inherited genetic elements both come from the mother and father, he added, or can come up in a toddler even when the mother and father don’t carry the gene.

Søgaard, who has two younger youngsters, stated the genetic connection was not a driving motivator in her mission to seek out out what occurred to Kirsten, however she has considered what it means for herself and her household.

When households attain out about doable kinfolk within the mind assortment, “that’s an ethical dilemma that we need to take into consideration,” Wirenfeldt Nielsen stated. In Søgaard’s case, she acquired approval for the Danish National Archives to examine the set of black books that comprise the names of each individual whose mind is within the assortment.

There on the record was Kirsten’s identify.

“I got an email back [from the National Archives], and they scanned the page where Kirsten’s name was, and her birthday, and the day they received the brain. And in the column out to the left, there was a number,” Søgaard remembered. “Number 738.” She instantly wrote an electronic mail to Wirenfeldt Nielsen, asking if that quantity corresponded to the bucket with Kirsten’s mind.

“I said, ‘Yes, that’s it,’” Wirenfeldt Nielsen recalled. But he additionally stated he couldn’t make certain the bucket was there as a result of a number of are lacking for unknown causes. He ventured all the way down to the basement storage room to confirm it was there.

On one of many rolling cabinets sat bucket #738.

Kirsten’s mind.

Bucket #738 -- Kirsten's brain -- sits on a shelf among the rest of the brain collection in the basement at the University of Southern Denmark in Odense.

When Søgaard first noticed it, she felt compelled to hug the bucket.

“I had learned a lot about Kirsten,” she stated. “I feel some kind of connection … (and) I know the pain that she felt, and I know what she went through.”

What Kirsten went via was one other extraordinary beat on this unbelievable story, and the lengthy historical past of psychiatric care in Denmark.

As a part of her remedy, Kirsten acquired what’s identified generally in Denmark as “the white cut.”

In medical phrases: a lobotomy.

The process was an integral a part of the nation’s psychiatric historical past. During the time the mind assortment was operating from the Nineteen Forties till the early Eighties, Denmark reportedly did extra lobotomies per capita than some other nation on this planet.

01 denmark brain sanjay

A have a look at the mind such as you’ve by no means seen it earlier than


03:08

– Source:
CNN

“It’s a very poor treatment, because you destroy a big part of the brain,” Wirenfeldt Nielsen stated. “And it’s very risky, because you can kill the patient, basically – but they had nothing else to do.”

Treatment choices had been restricted, and in some ways excessive. Seizures had been induced by putting electrodes on both facet of the top; insulin shock remedy meant sufferers had been administered massive doses of insulin, lowering blood sugar and leading to a comatose state; and the lobotomy, both transorbital – utilizing a pick-like instrument inserted via the again of the attention to the entrance lobe – or prefrontal.

The prefrontal lobotomy was pioneered by a Portuguese neurologist, Antonio Egas Moniz. Now thought of barbaric, he truly gained the Nobel Prize for the process in 1949.

A instrument is inserted into the frontal lobe, scraping away tracts of white matter – the explanation behind the “white cut” moniker. “Emotional reactions … are located at least in part in the frontal lobe,” defined Wirenfeldt Nielsen, “so they thought that just by cutting (there), that could sort of calm the patient down.”

Left: Portuguese neurologist Antonio Egas Moniz was awarded the Nobel Prize in 1949 for pioneering the prefrontal lobotomy.
Upper right: Lobotomies became a popular treatment option from the 1930s to the early 1950s. Here, a surgeon drills into a patient's skull at a hospital in England, 1946.
Lower right: By cutting tracts through brain matter in the frontal lobe, the belief was the lobotomy could treat symptoms of mental illness.

In Kirsten’s case, Inger stated there have been glimpses of “the old Kirsten” earlier than she acquired the white minimize – however after that, she was gone. In 1951, the yr after her lobotomy, Kirsten died.

She was simply 24 years outdated.

On a steel desk in a small, standalone constructing on the grounds of Oringe psychiatric hospital, Kirsten’s mind was eliminated, set right into a small plastic bucket, positioned in a picket field, and shipped – by common mail service – to the Institute of Brain Pathology at Risskov, to hitch the mind assortment.

Søgaard noticed the steel desk, the place a white picket block nonetheless sits on one finish – the place the heads had been positioned – and upon which small marks are nonetheless seen immediately. This is the place the skulls had been opened.

The standalone building at Oringe (left) housing the autopsy room where Kirsten's brain was removed in 1951 still stands today, and includes the wooden boxes (right) that were once used to ship the brains to Risskov.

Despite the graphic reminders, in reporting out this story each for herself, and for the newspaper, “it was important (for me) to not write a story that was a horror story,” she stated, including it was straightforward to look again and say, “How could you do that?”

“I don’t think the doctors wanted to do bad. I think they actually wanted to do good. … I think the most ethical thing you can do is to make sure that you know exactly what you can do with these brains. And that’s what they’re doing now. They’re trying to find out, ‘How can they help us?’”

There have been research utilizing the gathering over time, together with a discovery in 1970 of what’s now often known as familial Danish dementia, and a brand new examine is ongoing, centered on mRNA within the brains, by Danish researcher Betina Elfving.

For probably the most half, the brains symbolize untapped, huge potential. Yet the one in bucket #738 has already executed one thing extraordinary, thanks largely to Søgaard herself. She labored to interrupt the cycle of stigma surrounding psychological well being problems by sharing her most private, intimate household particulars with the world.

“(My grandmother) expressed gratitude,” Søgaard stated. “She also said, ‘I feel like I’m moving closer to my sister now.’”

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