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

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



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

But those that knew the reality wished it out.

Inform everybody our story, they stated, in regards to the brains within the basement.

As a toddler, Lise Søgaard remembers whispers, too, although these had been totally different – the household secret sort, 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 surprise. Sooner or later in 2020, she went to go to her grandmother, now in her mid-90s and residing at a care residence in Haderslev, Denmark. In any case that point, she lastly requested about Kirsten. Nearly 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 Could 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 an in depth bond. Then, when Kirsten was round 14 years previous, one thing started to vary.

Kirsten skilled outbursts and extended bouts of crying. Inger requested her mom if it was her fault, usually feeling that method as a result of the 2 ladies 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.”

After they obtained again from that household go to, Søgaard stated, Kirsten was gone.

It was the primary of many hospitalizations, and the beginning of a protracted and painful journey that may finally finish in Kirsten’s demise.

The analysis: schizophrenia.

Kirsten was first hospitalized in direction of the tip of World Conflict 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 supply look after sufferers.

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

However there was restricted understanding of what was occurring within the mind. The identical 12 months peace got here to Denmark’s doorstep, two docs working within the nation had an concept.

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 advisor at Aarhus College, 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 called the Institute of Mind Pathology, related to the Risskov Psychiatric Hospital in Aarhus, Denmark.

Medical 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 following three a long time 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 sort wherever on the planet.

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

A scarcity of funding meant it might not keep in Aarhus, however the College of Southern Denmark within the metropolis of Odense had supplied to choose up the mantle. Would Wirenfeldt Nielsen be occupied with 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. After which the brains, give or take a number of (nobody is aware of the place bucket #1 is, for instance) made their option to their new residence 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.”

Finally, the practically 10,000 buckets had been positioned on rolling cabinets, the place they continue to be at this time – ready – representing lives, and a spread of psychiatric problems.

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

What separates this assortment from another on the planet is that the brains collected in the course of the first decade are untouched by fashionable 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.

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

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

A historical past of The Mind Assortment

1945

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

Risskov, pictured right here within the early 1900s.

Credit score: Museum Ovartaci

1945-1982

Almost 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 score: Jesper Vaczy/Medical Museum

1982

The head of the mind assortment, Knud Aage Lorentzen, retires. No person takes his place, and the gathering sits untouched in a basement

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

Credit score: 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 score: olli0815/iStock/Getty Photos

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 score: 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 score: 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 family members. This time, SIND agrees

The assortment consists of affected person data and tissue preserved on slides, resembling these.

Credit score: Hanne Engelstoft

2017-2018

A scarcity of funding threatens the brains, and the gathering is saved by shifting 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 score: Samantha Bresnahan/CNN

Supply: 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 Moral 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 point 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 potential, she requested, that he had a mind there belonging to a lady named Kirsten?

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

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

At one level, Søgaard determined to concentrate on a single phrase her grandmother had advised 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 by 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. On the nationwide archives, they positioned a largely empty file in entrance of her. It wasn’t a lot to go on, however it confirmed Kirsten’s analysis of schizophrenia.

With out one other stable lead, Søgaard puzzled the place to go subsequent. Then, nearly in passing, as they seemed by previous household pictures 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 advised 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, might 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 might 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 Organic 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 therapy for a psychological well being dysfunction of their lifetimes – although Werge estimated that quantity would “almost certainly” be larger if the identical examine was finished at this time. (By comparability, that very same 12 months, lower than 15% of US adults acquired psychological well being companies.) Among the many different Nordic international locations, together with Sweden and Norway, Werge stated the numbers could 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 suggest its presence; as an alternative, docs should rely solely on a medical examination.

Schizophrenia presents itself in what the World Well being Group (WHO) calls “significant impairments in the way reality is perceived,” inflicting psychosis that may embrace delusions, hallucinations, disorganized conduct or ideas, and excessive agitation.

Roughly one in 300 persons are affected by schizophrenia worldwide, in keeping with 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


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– Supply:
CNN

The customary therapy because the mid-Nineteen Fifties has been anti-psychotic medication, which usually work by manipulating dopamine ranges: the mind’s reward system. However, Werge stated, it might include a value.

“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.”

Although there haven’t been many vital scientific breakthroughs relating to an understanding of the illness, researchers have confirmed that genetics and heritability play a big position.

In keeping with 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.”

These inherited genetic elements both come from the dad and mom, he added, or can come up in a toddler even when the dad and mom 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 thought of what it means for herself and her household.

When households attain out about potential family members 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 Nationwide Archives to examine the set of black books that include the names of each particular person 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 e-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. However he additionally stated he couldn’t be certain the bucket was there as a result of a number of are lacking for unknown causes. He ventured right 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 by was one other extraordinary beat on this unimaginable story, and the lengthy historical past of psychiatric care in Denmark.

As a part of her therapy, 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. In the course of the time the mind assortment was working from the Forties till the early Nineteen Eighties, Denmark reportedly did extra lobotomies per capita than another nation on the planet.

01 denmark brain sanjay

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


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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.”

Remedy choices had been restricted, and in some ways excessive. Seizures had been induced by inserting electrodes on both aspect of the top; insulin shock remedy meant sufferers had been administered giant doses of insulin, lowering blood sugar and leading to a comatose state; and the lobotomy, both transorbital – utilizing a pick-like instrument inserted by 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-about barbaric, he really received the Nobel Prize for the process in 1949.

A software 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 obtained the white lower – however after that, she was gone. In 1951, the 12 months after her lobotomy, Kirsten died.

She was simply 24 years previous.

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 wood field, and shipped – by common mail service – to the Institute of Mind Pathology at Risskov, to affix the mind assortment.

Søgaard noticed the steel desk, the place a white wood block nonetheless sits on one finish – the place the heads had been positioned – and upon which small marks are nonetheless seen at this time. That 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.

Regardless of 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 simple 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 called familial Danish dementia, and a brand new examine is ongoing, targeted on mRNA within the brains, by Danish researcher Betina Elfving.

For probably the most half, the brains characterize untapped, monumental potential. But the one in bucket #738 has already finished 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.’”