Tracing a Family’s Genetic Curse

An excerpt from "The Dressmaker’s Mirror: Sudden Death, Genetics, and a Jewish Family’s Secret” by Susan Weiss Liebman.

Susan Weiss Liebman’s watercolor of her son Michael and niece Karen playing together. Karen died at the age of thirty-six, prompting the author, a geneticist, to investigate a potential hereditary cause.

Excerpt From The Preface

The Dressmaker's Mirror: Sudden Death, Genetics, and a Jewish Family's Secret (Rowman & Littlefield, November 2024) explains how to find out if you or a loved one have a mutation likely to cause treatable heart, cancer, or other disease before it shatters your family. I believe I became a geneticist at a time when few women pursued this path because I was destined to help understand the family illness and advocate for genetic screening. My niece’s heart stopped beating one day when she was thirty-six and in her prime. Her autopsy report brought other family illnesses and early deaths into focus. Taken together, this caused the family to panic; there seemed to be a genetic problem that could trigger sudden death at any time. As a mother, I prayed for the curse to spare my children. As a geneticist, I set out to find the killer. Along the way, I became an expert in the burgeoning field of genetic testing.

In this book, I tell of the grief my family faced for generations because of this affliction, how we found the mutation behind it, and how finding it transformed our lives. The stories are true, although memory is imperfect, and I have changed a few names and details to protect people’s privacy. The dialogue conveys the sense of the conversations, although I don’t know the exact words that people used.

Excerpt from Chapter 1

“On Rosh Hashanah it is inscribed, and on Yom Kippur it is sealed . . . who shall live and who shall die, who in good time, and who by an untimely death . . .”

— Traditional Hebrew Prayer

Everything was different now. I just didn’t know it yet. Ring, ring, ring! I stopped setting the dinner table and picked up the telephone receiver. It was my sister’s son, Jeffrey. His voice sounded weird—too deep, too matter-of-fact, and the traditional “Hi” was missing. “Susan, it’s Jeffrey. Karen died.”

Just a few hours ago my older sister Diane had gushed with me on the phone about remodeling her daughter Karen’s Brooklyn high-rise co-op to include a nursery. Karen was only thirty-six, pregnant with her first child. She couldn’t have died. I was angry. Unable to take Jeffrey’s news in, I responded with my first thought. “Is this some sort of joke?”

My question didn’t insult or surprise him. He focused on getting me to accept his news. “You know I wouldn’t joke about this.”

His words made no sense. My knees collapsed, and I landed on a chair, still clutching the phone. “You mean her baby died.”

“Karen died, and the baby died with her.”

My face contorted. Words stuck in my throat. “What happened?”

“She was at a restaurant with Andrew when she just collapsed.” Karen and her husband Andrew lived in Brooklyn, while my nephew Jeffrey lived near his parents’ winter home in Florida. “Bystanders used Andrew’s cell phone to reach his sister. She got to the hospital in time to support Andrew when doctors pronounced Karen dead. That’s when she called me.”

How could this have happened? Young, healthy people don’t just die. Was it poison? Murder? Drugs? My body reacted with cramps, its usual response to panic. Gasping, I struggled to spit out each word. “Just died for no reason? How is that possible?” Did something go wrong with the pregnancy? I couldn’t help but think about my own pregnant daughter—was she in danger?

“We’re going to the airport now. Mom wants to see Karen tonight. She says for you to come to her Brooklyn co-op right away. She wants to be with you.”

“Of course.” How will Diane survive this? How can I comfort her?

I heard my nephew’s bass voice, “I have to go,” along with wailing in the background. They were rushing to catch their flight. Then came the dial tone.

I looked at the phone in disbelief. The receiver fell from my hand dangling on the cord as I ran yelling for my husband.

He raced down the stairs. “What’s wrong?”

“Karen and her baby died. I can’t believe it. She just collapsed and died.”

I rocked back and forth on the floor.

Alan took me in his arms and held me. “I’m so sorry.” He booked me on an early morning flight out of Chicago. He would follow the next day as the funeral would be a couple of days later.

Between bouts of crippling cramps and diarrhea, I contacted a colleague at the university to teach my genetics course and threw black clothes in a suitcase. My flight was on time, and they seated me in first class. Alan must have told them it was a bereavement trip.

The plane shuddered as it climbed. I stared out my window as white mist enveloped the plane. It was November 16, 2008, the twenty-eighth anniversary of my father’s deadly heart attack. The mist helped me imagine my father shaking his head as Karen joined him in heaven, saying, “You weren’t supposed to come yet.”

By the time of Karen’s death, I had been a genetics professor and researcher for over thirty years. I had always considered genetics in terms of my career. I studied it as an undergraduate at the Massachusetts Institute of Technology (MIT) and as 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. I was terrified that history would repeat itself with the death of my pregnant daughter.

This wasn’t the first time someone in my family died suddenly, but I was determined to make it the last.

****

I learned about another sudden death the year Watson and Crick first described DNA as a tiny, twisted Jacob’s ladder descending from heaven. One evening, when I was six, my father read to me as we lounged on his bed, leaning back on a curved wooden headboard. This time was precious because his two full-time jobs—as a high school teacher and a print shop owner—left little time for me. I felt secure and loved with his arm around my shoulder. The family often gathered here in my parents’ bedroom facing Ocean Avenue, a bustling and noisy thoroughfare in the Flatbush neighborhood of Brooklyn.

As Dad read, his voice cracked, and his hazel gray eyes teared. This was his normal response when reading sentimental children’s books.

My mother also reclined on her twin bed that night, leaning on the mahogany headboard that her decorator cousin picked out for us. Mom listened to the radio softly recount the news. Dad affectionately called her his newshound.

On top of my parents’ double dresser sat a framed sepia proof of my mother’s bridal portrait and an oval mirror stand displaying fancy perfume bottles. Mom let my big sister Diane and me rummage through the dresser, whose upper drawers yielded scissors, paper clips, and other useful items. She often warned us to be careful around her perfume bottles, as they were her pride and joy. A thick, clear glass slab protected the top of the dresser. I loved to study the black and white family photographs that lay scattered beneath the glass.

After reading the book, I wandered across the flat green carpet to look at the photos. I pointed to a small snapshot of a child I didn’t recognize. “Who’s that little boy?”

Dad pursed his lips and paused before he answered. “That’s my brother.”

This confused me because my father had only one brother, Cyrus, and he didn’t look like the child in the photo. To be sure, I tilted my head and asked, “You mean Uncle Cy?”

Dad opened his arms with his palms up. “No, another brother.”

This was big. I had another uncle. But why didn’t I hear about him before? I lifted my shoulders. “You have another brother? Who is he?”

Dad stared at the picture with a blank expression as he said, “His name was Eugene. He died a long time ago.” I absorbed this information. My uncle Eugene was dead, so that’s why I didn’t know him. But I reasoned he must have had children before he died. We visited aunts, uncles, and cousins, so I assumed I would know this new uncle’s kids. If not, I wanted to meet them.

I touched Dad’s arm. “Who’re his kids?”

Then came the bombshell. Dad put my hands together and surrounded them with his. “He didn’t have any kids. He was only four when he died.”

I gasped and stepped back. “Four! Littler than me?”

Dad furrowed his brow and explained, “Eugene died because a heavy mirror fell on him.”

Tears streamed down my cheeks. I couldn’t understand how my father was so calm. “Why aren’t you crying?”

Dad raised an eyebrow and steepled his fingers. “I’m not crying because he died a long time ago. And anyway, I didn’t even know him.”

I wrung my hands. “But everyone knows their brother.”

Dad took me in his arms and patted me as he clarified, “I didn’t know this brother because he died before I was born.”

This I could understand. If Eugene died before Daddy was born, then, of course, he wouldn’t miss him. But what about the pain his parents must have felt in losing a young child?

****

I only knew of these grandparents, David and Marion, from Dad’s stories because they died long ago. According to Dad, his mother had a knack for making the ordinary extraordinary. Her meals were artistic statements: she coiled carrots, sculpted radishes, swirled mashed potatoes, added dabs of ketchup or mustard for balance and interest, and completed her culinary presentations with parsley or other greens. She decorated every room in her house with tasteful art and classic furniture.

Marion was also a gifted seamstress who fitted and designed dresses from their home. One essential tool was her floor-standing mirror.

On the morning of August 10, 1916, Marion was sewing as four-year-old Eugene played on the floor. Marion was stitching white lace trim on a dark blue dress and wanted it to be perfect. Eugene practiced somersaults: head up, head down. His straight hair flapped, and he laughed when he completed each tumble. He was good at flips and almost never lost his balance. But that day, his equilibrium failed him. His legs came tumbling down and struck the massive floor-standing mirror. The mirror teetered back and forth until it crashed down on the little boy. Eugene lay motionless. In the time it took Marion to cross the room, her son was dead.

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Susan Weiss Liebman, PhD, was among MIT's early female undergraduate students, part of a pioneering wave of women entering the institution. With an MS from Harvard and a PhD in genetics from the University of Rochester, she served as a biology professor at the University of Illinois at Chicago, where she taught genetics and led a research group for more than three decades. Later, she transitioned her lab to the University of Nevada, Reno, where she is currently a research professor. Over the years, she has obtained over $13 million in external grants to support her research. ​Susan raised two children and now delights in four grandchildren alongside her husband of fifty-five years. Following the sudden death of her niece, Liebman became a medical detective and committed to promoting awareness of genetic testing.

Five tiny delights

• Wrapping myself in a warm blanket

• Eating dark chocolate

• Sketching

• Looking out the window at snow-covered trees and landscape

• Visiting with my grandchildren on Zoom

Five tiny Jewish delights

• The smell of my husband’s fresh-baked challah

• Lighting and watching Shabbat candles burn

• Being called up to the Torah

• Running a Zoom Sunday school class for covid conscious nine-year-old shut-ins, including my grandson

• Every Jewish holiday—especially Passover—where I touch the souls of my departed family.