Susan Weiss Liebman spent years searching for the minute genetic mutation lurking in her family’s DNA that had been causing unexplained abrupt deaths for generations.
Her investigation, detailed in her new book The Dressmaker’s Mirror, started with the sudden – and unexplainable – death of her niece Karen.
Dr Susan Weiss Leibman’s book is simultaneously a memoir, an exploration of genomics, and a mystery, as she tries to piece together the root cause of untimely deaths plaguing her family
Karen was 36, otherwise healthy, and pregnant when she collapsed at a restaurant in Brooklyn in 2008 due to dilated cardiomyopathy (DCM), a condition that causes the heart to become weak, enlarged, and unable to pump blood effectively.
This was the same condition Karen’s mother Diane had been dealing with for years. It was genetic, but no one would learn that for nearly a decade.
Dr Liebman writes: ‘This meant that Diane’s illness was genetic and wasn’t a complication of a viral infection, as doctors formerly assumed. Instead, Diane transmitted a deadly gene to Karen.’
‘We had to find the mutation before God’s cruel game of Russian roulette picked off more members of the family.’
The tragedy, nearly a year after her father’s sudden fatal heart attack at 66, prompted the 78-year-old to use her expertise as a geneticist to find an answer. She pored over research and corresponded with experts in the field about the latest discoveries in the variations of human DNA that make a person who they are.
Dr Liebman soon learned many members of her family had inherited a potentially lethal gene mutation responsible for making a protein crucial for maintaining the function and structure of muscle cells, including those that make up the heart.
Dr Susan Weiss Liebman’s new book The Dressmaker’s Mirror, is both a memoir and genetic exploration, tracing generations of her family marked by sudden deaths
When Dr Liebman was a child, she heard the story of the untimely death of her father’s brother, Eugene.
Eugene was just four years old when he was crushed to death by a falling mirror in 1916.
Family members tried to lift the mirror off him, but it was too late and the story haunted Dr Liebman for decades – until she learned it was a lie.
The four-year-old’s death certificate said nothing of an accident, a mirror, or being crushed. In reality, the child had died of congestive heart failure following a five-day hospital stay.
The death wasn’t a freak accident. He had inherited a killer gene that later took Dr Liebman’s grandmother, father and niece, among others in her family tree.
Her father never knew the family’s grim secret and she didn’t learn the truth until she had already been an accomplished geneticist for three decades.
She said: ‘I had always considered genetics in terms of my career. I studied it as an undergraduate at the Massachusetts Institute of Technology (MIT) and a graduate student and postdoctoral fellow at Harvard and the University of Rochester.
‘I understood that genetics determined my eye and hair color, my handedness, and other traits, but I never thought that it would have a significant impact on my actual life. Now that all changed.’
Dr Liebman’s niece Karen is pictured with her husband Andrew. The couple is showing off Karen’s baby bump just one day before her freak deadly heart attack
The hunt for the culprit took years and several rounds of tests of Dr Liebman’s and her sister Diane’s DNA.
With each test, they came out with no answers. There were no red flags or clues.
It wasn’t until Diane passed away in 2016 at 73 of heart failure that the puzzle pieces began to fall into place.
Genomics is constantly evolving. With advances in technology come more effective ways of exploring genes in greater detail and identifying previously unknown genes or gene variants.
The sisters had provided blood samples to geneticists now working at Northwestern University before Diane’s death.
When Dr Liebman reached out to them asking about the potential genetic link to her condition, Northwestern cardiologist Dr Beth McNally delivered the news that scientists had found a gene variation in Diane’s DNA that had previously never been linked to cardiomyopathy – but it could be the answer now.
Dr McNally said at the time of the discovery that Diane’s gene was the only one that had been linked to cardiomyopathy. But, as years went on and more reports potentially linked the gene and the disease, it ‘makes it more likely that this may be a real association.’
Dr Liebman and her family are Jewish, a population at a higher risk for having the mutation that makes them more prone to fatal cardiac conditions.
![Pictured is Dr Liebman's father [left] who died when he was 66 of a heart attack, next to his brother Cyrus. Their father David sits on the far right. He died at 41](https://i.dailymail.co.uk/1s/2024/12/20/22/93369411-14197843-Pictured_is_Dr_Liebman_s_father_left_who_died_when_he_was_66_of_-m-26_1734732893878.jpg)
Pictured is Dr Liebman’s father [left] who died when he was 66 of a heart attack, next to his brother Cyrus. Their father David sits on the far right. He died at 41
‘I recently completed a small research study that asked if the mutation in my family is a major cause of DCM among Ashkenazi Jews. Our results suggest it is,’ Dr Liebman said.
The mutation changed a crucial section of DNA. In some cases, Dr Liebman explained, this can lead to a premature stop in the production of a certain protein, which can contribute to potentially deadly heart diseases like DCM.
When she learned of the faulty gene, which she believes was passed down through her father’s side, she alerted everyone in her family.
She said: ‘I contacted all first and second cousins who, respectively, had a 12 percent and 6 percent chance of having the mutation.
‘Those who knew of my niece Karen’s death were at once interested. Those whom I didn’t know and didn’t know Karen were sometimes skeptical about the relevance of my information and at first thought I might be part of a scam.’
Dr Liebman also found out that neither she nor her children carried this deadly gene mutation – meaning they could no longer pass the gene on to future generations.
Finally, Dr Liebman thought, they had an answer for the untimely deaths that had plagued her family for generations. Finally, they could know for sure whether future generations of their family faced similar fates.
DCM does not have to be fatal. It can be managed with proper heart-healthy lifestyle factors, regular checkups, echocardiograms, and medications such as beta-blockers.
Dr Liebman is pictured with her husband Alan at their wedding reception in 1969
In her genetic exploration, Dr Liebman was made to reconcile her ancestral faith with the tragedies that had befallen them.
Dr Michael Arad of Tel Aviv University, whose team had identified 23 mutations in the new faulty gene, told her the families he had seen with the mutation were of Ashkenazi Jewish descent just like Dr Liebman and her family, making it a Founder gene – a gene in the DNA of a small ancestral population that is passed down to a large number of offspring.
His research found some people who died suddenly had shown no signs of imminent death on echocardiograms, the standard method for gauging the heart’s electrical activity.
All Ashkenazi Jews descend from a small population of less than 500 people in Eastern Europe whose genetic origins were equally split between Europe and the Levant, which today covers parts of Syria, Lebanon, Jordan, Israel, Palestine, and parts of Turkey and Iraq.
‘Remarkably,’ she said,’ the mutation in my family occurred in one out of 800 Ashkenazi Jews but was not present in the other ethnic populations.’
As the small population reproduced with each other, the faulty gene mutation spread in their offspring.
While once confused as to why the family would lie about Eugene’s death more than a century ago, Dr Liebman now understands his mother hid the truth because she didn’t want her sons to be ostracized and without marriage prospects due to the known risk of passing along their condition.
Dr Liebman wrote: ‘Marion’s imaginary shattered mirror and the resulting broken glass shards embody her perceptive fears for her family’s future.
‘Marion’s fears for her family proved prophetic, as premature deaths plagued her descendants, including her own at 59, her mother at 47, her son at 66, and later generations suffering from heart-related conditions.
‘Despite Marion’s premonition, there was nothing she could do.’
The lack of autopsies for Marion and her son obscured the genetic connection to DCM, which might have saved future lives through earlier awareness and treatment.
Dr Liebman continued: ‘Grandma Marion modeled for us how to deal with loss by choosing life in response to heartbreak.
‘What she couldn’t have known was that we would learn the cause of all the deaths, and that this would allow genetic testing and early treatment to end the family curse.’
