Editor’s Note: Watch the special documentary, “World’s Untold Stories: The Brain Collectors,” November 12-13 on CNN International.
There have been whispers for years. Rumors swirled; stories exchanged. It wasn’t a secret, but it also wasn’t openly discussed, adding to a legend almost too incredible to believe.
But those who knew the truth wanted it out.
They told everyone their story about the basement’s brains.
As a child, Lise Søgaard remembers whispers, too, though these were different – the family secret kind, hushed because it was too painful to speak it out loud.
Søgaard knew little about it, except that these whispers centered on a family member who seemed to exist solely in one photograph on the wall of her grandparent’s house in Denmark.
Kirsten was the name given to the little girl in that picture. She was the younger sister of Søgaard’s grandmother, Inger – that much she knew.
“I remember looking at this girl and thinking, ‘Who is she?’ ‘What happened?’” Søgaard said. “But also this feeling of a little bit of a horror story there.”
As she grew into adulthood, Søgaard continued to wonder. She finally visited her grandmother in 2020. She was in her mid-90s, and lives at a Haderslev, Denmark, care home. After all this time, she finally asked Kirsten. Almost as if Inger had been waiting for that very question, the floodgates opened, and out poured a story Søgaard never expected.
Kirsten Abildtrup was the youngest of five sisters and her brother, Inger. Inger, a child of five, remembers Kirsten as quiet, smart, and the sisters sharing a close bond. At 14 years of age, Kirsten began to notice a shift in her life.
Kirsten experienced frequent crying fits and outbursts. Inger asked her mother if it were her fault. It was often because the two girls were so close that she felt that way.
“At Christmas, they were supposed to go on a visit to some family members,” Søgaard said, “but my great-grandmother and father, they stayed home and sent all of their children away except for Kirsten.”
When they got back from that family visit, Søgaard said, Kirsten was gone.
It was the first of many hospitalizations, and the start of a long and painful journey that would ultimately end in Kirsten’s death.
The diagnosis is schizophrenia.
Kirsten was hospitalized for the first time in the aftermath of World War II when Denmark and the rest Europe were finally on the brink of peace.
Denmark, like many other countries, was also struggling with mental illness. To provide care for patients, psychiatric institutions were established in all parts of the country.
But, we had limited knowledge of the brain’s workings. The same year peace came to Denmark’s doorstep, two doctors working in the country had an idea.
Autopsies were routinely performed on patients who died in psychiatric hospitals. What if, these doctors thought, the brains were removed – and kept?
Thomas Erslev, historian of medical science and research consultant at Aarhus University, estimates that half of all psychiatric patients in Denmark who died between 1945 and 1982 contributed – unknowingly and without consent – their brains. They went to what was later known as the Institute of Brain Pathology. It is connected to Risskov Psychiatric Hospital, Aarhus, Denmark.
Doctors Erik Stromgren, Larus Einarson were the architects. Erslev stated that it took five years for the institute to be built. Knud Lorentzen, a pathologist from Knud, then spent the next three centuries building the collection.
The final tally would amount to 9,479 human brains – believed to be the largest collection of its kind anywhere in the world.
In 2018, pathologist Dr. Martin Wirenfeldt Nielsen got a call. The brain collection as it would be called was on the move.
The University of Southern Denmark, Odense, offered to take over the reins. However, the University of Aarhus was unable or willing to provide funding. Wirenfeldt Nielson would be interested to oversee it?
“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?”
Each brain was placed in a yellowish-green plastic container. Formaldehyde was preserved. The buckets were then transferred to new white buckets. They were stronger for transport and were hand-labeled with a number in black marker. And then the brains, give or take a few (no one knows where bucket #1 is, for example) made their way to their new home in a large basement room on the university’s campus.
“The room wasn’t actually ready when they moved it down here,” Wirenfeldt Nielsen said. “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 nearly 10,000 buckets were placed on rolling shelves, where they remain today – waiting – representing lives, and a range of psychiatric disorders.
There are roughly 5,500 brains suffering from dementia; 1,400 with schizophrenia; 400 people with bi-polar disorder; 300 with depressive symptoms, and many more.
What separates this collection from any other in the world is that the brains collected during the first decade are untouched by modern medicines – a time capsule of sorts, for mental illness in the brain.
“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 said.
But it has not been without controversy. In the 1990s, the Danish public got wind of the collection, which had been sitting idle since former director Lorentzen’s retirement in 1982.
It would be the beginning of one of the major ethical science debates here in Denmark.
The Brain Collection: A History
1945 The Institute of Brain Pathology is established, which is connected to Risskov Psychiatric Hospital, Aarhus, DenmarkRisskov. This image was taken in the early 1900s. Credit: Museum Ovartaci
1945-1982Nearly 9.500 brains were collected from patients with psychiatric disorders who died in the country without their permission. The brains were sent from Danish hospitals, including Rigshospitalet, in Copenhagen.
1982 Knud Aage Lorentzen, head of the brain collection retires. 1982Knud Aage Lorentzen, head of the brain collection, is retired. The collection sits undiscovered in a basement.
1987The Danish Council of Ethics is establishedThe Council of Ethics is an independent group formed to advise the Danish parliament (pictured here in 2016) on ethical matters.Credit: olli0815/iStock/Getty Images
1991After the Council of Ethics says the brains can be used with certain restrictions in place, SIND (Denmark’s national association for psychiatric health) demands the brains be buried – sparking one of the first major ethical science debates in DenmarkSome pieces of brain material are preserved in paraffin wax.Credit: Hanne Engelstoft
2005Danish scientist Karl-Anton Dorph-Petersen takes over the collection’s daily maintenance at AarhusKarl-Anton Dorph-Petersen helped revive and preserve the collection in the mid-2000s.Credit: Hanne Engelstoft
2006 The Council of Ethics ruled that it was ethically sound to use brains of deceased psychiatric patients for research purposes without the consent of their families. SIND agrees.
2017-2018 A lack of funding threatens the collection. The collection is moved to Odense where Dr. Martin Wirenfeldt Nielsen assumes control. The brains are placed in new white buckets and moved to Odense where they remain on rolling shelves.
Source: Thomas Erslev (Historicist of Medical Science)
“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,” said Knud Kristensen, the director of SIND, the Danish national association for mental health, from 2009 to 2021, and current 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 heated debate, SIND changed its mind. “All of a sudden, they were very strong proponents for keeping the brains,” Erslev said, “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 said, “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.”
The collection was moved to Odense in 2018 after the ethical debate had been settled. Wirenfeldt Nielsen took over as caretaker.
A few years later, he would get a message from Søgaard. It was possible, she inquired, that he had a brain in the area belonging to Kirsten.
In the search for what happened to her great aunt Kirsten, Søgaard realized there were clues all around her. But piecing together what exactly had happened to her grandmother’s sister was slow, filled with dead ends and false starts.
Yet she was enthralled, and began officially reporting her journey for Kristeligt Dagblad, the Copenhagen-based newspaper where she worked – eventually bringing it to light in a series of articles.
At one point, Søgaard decided to focus on a single word her grandmother had told her, the name of a psychiatric hospital: Oringe.
“I opened my computer and I searched for ‘Oringe patient journals,’” she said. After putting in a request through the national 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.”
This excitement was short-lived. The national archives placed a mostly empty file before her. It wasn’t much to go on, but it confirmed Kirsten’s diagnosis of schizophrenia.
Without another solid lead, Søgaard wondered where to go next. Then, almost in passing, as they looked through old family photos together, her mother said something that she’d never heard before.
“She said, ‘You know, they might have kept her brain,’ and I said, ‘What?!’” Søgaard told CNN’s Dr. Sanjay Gupta at her house outside of Copenhagen. “And she told me what she knew about the brain collection.”
At age 95, Søgaard’s grandmother, Inger, could still clearly picture visiting her little sister Kirsten in the hospital, after the symptoms she first started experiencing at age 14 continued to progress.
Upon one visit, Inger remembered, “(Kirsten) was lying there, completely apathetic. She was unable speak to us. … Another day we went to visit her, and she was gone from her room. They said she had thrown a drink at a nurse and sent her to the basement where she was (restrained) 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.”
Inger felt confused and scared, she said, because it could have been anyone, including her, that might get “sick.”
Sankt Hans is one of the oldest and largest psychiatric hospitals Denmark has. Dr. Thomas Werge still walks the same ground he used to as a child when his grandmother was there. He now runs the Institute for Biological Psychiatry, where he and his colleagues study the biological causes of psychiatric disorders.
A 2012 study found that roughly 40% of Danish women and 30% of Danish men had received treatment for a mental health disorder in their lifetimes – though Werge estimated that number would “almost certainly” be higher if the same study was done today. (By comparison: In the same year, less that 15% of Americans received mental health care. Among the other Nordic countries, including Sweden and Norway, Werge said the numbers would be comparable 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.”
There are no biomarkers or blood tests that can be used to diagnose schizophrenia. Instead, doctors must rely on a clinical exam.
Schizophrenia presents itself in what the World Health Organization (WHO) calls “significant impairments in the way reality is perceived,” causing psychosis that can include delusions, hallucinations, disorganized behavior or thoughts, and extreme agitation.
According to the WHO, approximately one in 300 people worldwide are affected by schizophrenia. However, less than one-third will ever receive specialist mental healthcare.
Visit a “cemetery for the brainless” in Denmark
The standard treatment since the mid-1950s has been anti-psychotic drugs, which typically work by manipulating dopamine levels: the brain’s reward system. However, Werge stated that it can be costly.
“Schizophrenia and psychosis are linked to creativity,” he said. “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 significant scientific breakthroughs regarding an understanding of the disease, researchers have confirmed that genetics and heritability play a significant role.
According to Werge, the heritability estimate is as high as 80% – the same as height. “It’s not a surprise to people that if you have very tall parents … there’s a lot of genetics in that,” he said. “The genetic component is equally large in most of the mental disorders actually.”
Those inherited genetic factors either come from the parents, he added, or can arise in a child even if the parents don’t carry the gene.
Søgaard, who has two young children, said the genetic connection was not a driving motivator in her mission to find out what happened to Kirsten, but she has thought about what it means for herself and her family.
When families reach out about possible relatives in the brain collection, “that’s an ethical dilemma that we need to take into consideration,” Wirenfeldt Nielsen said. In Søgaard’s case, she received approval for the Danish National Archives to check the set of black books that contain the names of every person whose brain is in the collection.
There on the list was Kirsten’s name.
“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 immediately wrote an email to Wirenfeldt Nielsen, asking if that number corresponded to the bucket with Kirsten’s brain.
“I said, ‘Yes, that’s it,’” Wirenfeldt Nielsen recalled. But he also said he couldn’t be sure the bucket was there because a few are missing for unknown reasons. To confirm, he went to the basement storage area.
Bucket #738 was found on one of the rolling shelves.
When Søgaard first saw it, she felt compelled to hug the bucket.
“I had learned a lot about Kirsten,” she said. “I feel some kind of connection … (and) I know the pain that she felt, and I know what she went through.”
Kirsten’s experience was yet another remarkable beat in this amazing story and the long history in Denmark of psychiatric treatment.
As part of her treatment, Kirsten received what’s known commonly in Denmark as “the white cut.”
A lobotomy is a medical term.
The procedure was an integral part of the country’s psychiatric history. Denmark was said to have performed more lobotomies per head than any other country during the period of brain collection from the 1940s through the early 1980s.
A look at the brain like it’s never been before
“It’s a very poor treatment, because you destroy a big part of the brain,” Wirenfeldt Nielsen said. “And it’s very risky, because you can kill the patient, basically – but they had nothing else to do.”
There were few options for treatment and many of them were extreme. Seizures were induced by placing electrodes on either side of the head; insulin shock therapy meant patients were administered large doses of insulin, reducing blood sugar and resulting in a comatose state; and the lobotomy, either transorbital – using a pick-like instrument inserted through the back of the eye to the front lobe – or prefrontal.
Antonio Egas Moniz, a Portuguese neurologist, pioneered the prefrontal lobotomy. He was now considered barbaric and won the Nobel Prize in 1949 for the procedure.
A tool is inserted into the frontal lobe, scraping away tracts of white matter – the reason behind the “white cut” moniker. “Emotional reactions … are located at least in part in the frontal lobe,” explained Wirenfeldt Nielsen, “so they thought that just by cutting (there), that could sort of calm the patient down.”
In Kirsten’s case, Inger said there were glimpses of “the old Kirsten” before she got the white cut – but after that, she was gone. Kirsten died in 1951, one year after her lobotomy.
She was only 24 years old.
On a metal table in a small, standalone building on the grounds of Oringe psychiatric hospital, Kirsten’s brain was removed, set into a small plastic bucket, placed in a wooden box, and shipped – by regular mail carrier – to the Institute of Brain Pathology at Risskov, to join the brain collection.
Søgaard saw the metal table, where a white wooden block still sits on one end – where the heads were placed – and upon which small marks are still visible today. This is where the skulls were removed.
Despite the graphic reminders, in reporting out this story both for herself, and for the newspaper, “it was important (for me) to not write a story that was a horror story,” she said, adding it was easy to look back and say, “How could you do that?”
“I don’t think the doctors wanted to do bad. I believe they wanted to do something 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 many studies using the collection over time, including a discovery of familial Danish disease in 1970. Betina, a Danish researcher is currently conducting a study on mRNA levels in the brains.
The brains are vastly underutilized and have enormous potential. Yet the one in bucket #738 has already done something extraordinary, thanks in large part to Søgaard herself. She shared her most intimate, personal details about her family to help break the stigma surrounding mental disorders.
“(My grandmother) expressed gratitude,” Søgaard said. “She also said, ‘I feel like I’m moving closer to my sister now.’”