Bodily Inheritance

Whitney Walters

When my mother called my father at work, crying because she felt ill and complaining of pain in her biceps, he attributed it to the work she had been doing lately and advised her to take some medicine and rest. He’d call her back in half an hour to check on her. As a stay-at-home mom, she was watching my two-year-old sister, Makayla, after putting me and my six-year-old sister, Amanda, on the bus to school.

Following a shower, she took some aspirin and sat in the blue recliner in our upstairs living room with a heating pad on her arm. Perhaps, to distract herself from the pain, she looked out the large picture windows at the snow blanketing our deck and the ornamental cherry tree, tranquil until a squirrel haphazardly darted across the yard. Maybe she contemplated the shadows the sun cast on the off-white carpet and took stock of her to-do list for the day. Perhaps she closed her eyes and remembered the trip she and my dad had taken to Maui two years ago to celebrate their tenth wedding anniversary.

When Dad called her back around ten o’clock, no one picked up the phone. Worried, he drove the two miles home from Hy-Vee to check on her. Our dog, a cottony keeshond named Buckwheat, along with Makayla, greeted him at the door.

“Where’s Mommy?” Dad asked.

“Sleeping,” she lisped.

Upstairs, Dad found Mom sitting in the recliner, motionless. She was still warm, but without a pulse. Her lips were tinted blue. He immediately called 911 and tried to revive her.

It was January 16, 1998. She was thirty-two. I was eight.

***

After Mom’s death, my sisters and I were never taken to grief counseling, though I’m told we talked with our pastor about her. I was raised Lutheran and hold to that faith, but the lack of a definite cause for Mom’s death challenged it, particularly as I went through confirmation. How could I believe in a God who would unexpectedly take her away and devastate our family? She didn’t choose to leave us. She wasn’t sick. No one else killed her. My brain craved a logic for the seemingly senseless death to alleviate my suffering and quell my anxiety about a similar fate. In thinking about it now, I don't know that having a reason for her death would relieve me of my frustration. It might dispel some anxiety about dying young by providing information to base decisions on, but no matter the reason for her death, she's supposed to be here, and I feel cheated.

I've often hypothesized about what my life would be like if she hadn't died when I was eight, but the older I get, the more uncomfortable this exercise becomes. I don't want to think she needed to die so Dad would marry Sue, who would suggest my sisters and I try competitive swimming, which I'd fall in love with, which would bring me to Concordia College, where, through friends on the swim team, I'd meet Ben, who would become my husband and the father of our children, and where I'd meet professors who would facilitate my love of collegiate learning and guide me to earning a Master of Fine Arts, which would lead to a collegiate teaching career and connect me with influential colleagues and opportunities. In sum, I don’t want to think she needed to die in order for me to live the rich life I love now.

Would I die in order for my children to achieve their greatest hopes and dreams? Undoubtedly, yes. And yet, undoubtedly, I'd prefer to live for them, supporting and encouraging them while they accomplish those goals, so they would not also be grieving my absence on their life’s journey. Is it possible, in another universe, I'd be married to the love of my life with remarkable children, a vibrant, fulfilling career, a joy-filled existence, AND my mother alive to partake in it? Of course—I have friends who live that hypothetical now.

Would I likely be in a different place, doing different things with different people? Almost certainly. At the time of Mom’s death, Dad had recently completed the training to become a Hy-Vee store manager, which could have moved us south to Iowa or any of the states bordering it. (Her death put a decade’s pause on that endeavor). I don't want to know the odds—if it’s even possible to factor in all the decisions and chance encounters and conversations that brought me where I am now—of replicating my life as it is but with Mom being alive. In saying that, I don't know how I'm supposed to feel. Part of me feels selfish, wanting to retain what I have despite her loss. If presented with the magical opportunity to change history so she wouldn't die, but I'd still remember what had been without her, would I do it? I'm not sure I could. I’m caught between moving forward and looking back.

***

After Mom’s death, my uncle (her only sibling) and maternal grandparents underwent testing at the Mayo Clinic in Rochester in hopes of better understanding her passing and their potential health concerns, but no insights were obtained. Their electrocardiograms and heart ultrasounds all came back normal. In hindsight, I’m surprised my sisters and I were not also taken in for medical testing, given a genetic mutation could have originated with her.

Doctors say Mom didn't have a heart attack. Her heart simply stopped, akin to when one turns off a car engine. By all accounts, she was healthy—no chronic conditions to be aware of. And yet, her heart stopped beating, seemingly of its own volition. Any time I visit a medical professional requiring a questionnaire about family history, I always pause when it comes to questions about heart conditions. Do I check yes or no? And so, there is usually an awkward conversation before whomever I'm talking to expresses condolences and perhaps takes some notes for my file.

Doctors at the time hypothesized long QT syndrome (LQTS) was the cause of Mom’s unexpected death, which, according to the Mayo Clinic is, “a heart rhythm disorder that causes fast, chaotic heartbeats. The irregular heartbeats can be life-threatening. LQTS affects the electrical signals that travel through the heart and cause it to beat.” The disorder can be genetic or acquired through other medical conditions.

***

In college, I went to a campus blood drive in hopes of donating for the first time. I was most anxious about the short, sharp pain of getting stuck with the needle, but that changed when the medical professional found my pulse and a confused look crossed their face as they began counting beats. "Let’s try again," they said and adjusted their fingers on my wrist. Again, my pulse seemed to worry them.

"Let me go grab someone else to check your pulse."

I nervously looked around the busy room for my friends—they were already extending their arms to have a needle inserted or reclining while their blood collected in a bag. What was wrong with my pulse? Was it just hard to find? As an athlete, my heart should be healthy, right?

A minute later, another blood drive worker sat in front of me and repeated the process of checking my pulse. Afterward, they shook their head and said, "I'm sorry; you're not going to be able to donate today. You've got a slightly irregular heartbeat. It's nothing to worry about—everyone has moments where their rhythm gets off. Thank you for trying to donate today. We hope you'll try again."

I nodded and smiled tightly, but their casual assessment wasn't comforting to me. I could feel my pulse quickening. Was my irregular heartbeat a link to what had happened with Mom? Was I in danger of dying—a ticking time bomb? The blood drive workers didn’t know about Mom. Should I go to the hospital? After another glance at my occupied friends, I quickly gathered my things and tried to remain composed as I left the area before dashing up to my dorm room to call Dad.

My "rub some dirt in it" dad also didn't think the situation was one to brush off.

***

A few weeks later, I went into a typical examination room where a doctor listened closely to my heart through his stethoscope, taking longer than the traditional “breathe in, breathe out” during a routine exam.

After considering what he’d heard and observed, the doctor said, “Your heartbeat is fine today; nice and steady. Something important to know is our hearts beat millions of times a day. So, there are moments when it is slightly irregular. It’s nothing to be concerned about. What probably happened when you went to donate blood is the phlebotomist caught you at one of those moments when your heart was a little offbeat. It could have been from anxiety about giving blood or any number of other factors. It’s additionally more common for young people to have slightly irregular heartbeats throughout the day. Even so, with what happened to your mom, I’m going to have an electrocardiogram and an ultrasound done on your heart.”

I was happy with his decisions and appreciated the genuine concern and consideration he gave to my apprehensions. My lack of medical background paired with the inconclusive diagnosis for Mom’s death typically makes me feel like someone easily dismissed during discussions of my medical history.

***

As I sat in the waiting room, first studying the pamphlet about electrocardiograms and then the abstract pattern on the chairs, I hypothesized what would happen. If they found something linked to Mom, would I be more or less afraid knowing what was potentially ahead? Would there be preventative measures? Medications, surgeries, medical devices, lifestyle changes? And if they found nothing, then what? Mom had no warning signs. Maybe I would live my life and nothing would happen, or maybe I would live my life and sudden cardiac arrest would be unexpected, though slightly less unexpected than hers. I nervously twisted the alexandrite ring Dad had picked out for me as a confirmation gift. Whatever I learned, I could not unknow.

After twenty minutes, a technician brought me to a curtained cubicle where I was directed to change into a paper gown and lay on an exam bed before electrodes were placed on my ankles, thighs, wrists, arms, chest, back, and neck. I was to keep my breathing calm and steady and not move my body for three to four minutes while the machine monitored my heartbeat. I anxiously waited to feel a small shock, since it’s called an electrocardiogram, and was surprised I didn’t feel anything while the machine ran.

While I stared at the ceiling, I wondered what an electrocardiogram would have reported if Mom had gotten one done. Many years later, I’d learn Mom had fainted at my paternal grandparents’ cabin one summer as well as after strenuous activity, a symptom of long QT syndrome, and wonder why those moments weren’t seen as red flags for an underlying condition, as obstructions to her life’s aims.

The technician removed the electrodes when the machine was finished and told me I was free to go after getting dressed. I searched their face for an indication of the test’s results and found it impassive.

My ultrasound was scheduled the following day. I appreciated having a female technician, as I had to remove all the clothing on the top portion of my body for her to perform the ultrasound. After spreading the jelly around, she began to slide the probe to different places on my chest and move it into various angles to study my heart’s movement. As she did so, I could hear blood propelling through my heart via the machine’s audio. It alternated between sounding like someone sucking on a straw and the sound of moving water, like a strong river churning or ocean waves rolling onto shore. As someone who grew up vacationing on the lake at our family cabin and who swam competitively for a decade, I found the fluid sound comforting.

The technician was quiet throughout the examination, but when I flipped onto my right side so she could look at my heart from other viewpoints, she showed me the image of my heart on the grayscale computer screen connected to the ultrasound probe. Just like when a pregnant woman has her fetus examined and can see the baby’s formation, I could see my heart. The technician pointed out a few parts of my heart she had been paying attention to, but I was entranced by the way the muscle convulsed in and out, pumping my blood.

Despite my many medical questions about Mom, I wasn’t motivated to become a medical professional to answer them, as my sister, Amanda was. However, being able to listen to and see my heart affirmed I was alive, and in that way, it was thrilling. The experience both enchanted me with its answers and gave me more to worry about.

The electrocardiogram, ultrasound, and physical examination all indicated my heart was working perfectly fine, and the doctor later concluded that when I went to donate blood, the phlebotomists indeed caught my heartbeat at a time when it was slightly offbeat. Nothing suggested any reason for me to fear my heart suddenly stopping or having other issues. Although those appointments did not fully quell my anxiety about dying young, lacking other testing options, I let my personal medical investigation lie for roughly a decade.

Within that decade, I wrote my MFA thesis about Mom's death and its aftereffects. During that process, I read Mom’s autopsy report for the first time, which was surreal. I asked my maternal grandmother for a copy of it and the EMT report after she mentioned having both. I had never thought to ask Dad for them, which embarrassed me given my thesis topic and my concerns about what I’d genetically inherited. When I received the documents, I began reading slowly and then skimmed them quickly as my tears rapidly accumulated. Given how many times I’d replayed that day in my head, I hadn’t anticipated how emotional I’d be while reading the unfiltered play-by-play of the events after her death. It took over a month for me to muster the fortitude to open the manila folder again.

When I came back to the autopsy report, I took a deep breath and willed myself not to break down crying as I methodically read it. I had to look up many terms, and deciphering the handwriting on the EMT report was its own challenge. Was it distressing to read the medical facts of her death? Undoubtedly so. I was physically, emotionally, and mentally exhausted from reliving that day in excruciating detail. However, there was also solace in knowing every action that had been performed. Finally, I had some primary medical facts to work with regarding my bodily inheritance.

Except, the autopsy report concludes: “cause of death probably due to cardiac dysrhythmia.” Probably.

The report pushed me to look more into long QT syndrome to better understand it as a medical condition, but I was discouraged to, once again, find no new information about long QT syndrome diagnostic testing. I wished for the impossible genetic testing on Mom and a record of her heartbeat as I remained fearful of dying young, particularly as I aged closer to her last year.

***

In 2018, when I was pregnant with our first child, Ben and I needed to decide what screenings we wanted done. Once again, the enduring concern about my genetic inheritance, and now, more pressing, the question of what I could pass on to our child, arose. When we inquired about any testing available regarding long QT syndrome, our doctor recommended consulting a geneticist, and I agreed to the referral, as my greatest fear of dying young had now mutated to include the unconscionable premature death of my child. Unfortunately, the specialist was unable to offer any new testing options beyond the electrocardiogram and heart ultrasound I’d already had done. However, they knew of a researcher at the Mayo Clinic in Rochester who was looking into long QT syndrome and may want to speak with me as part of their research.

Strangely, I don't remember the geneticist providing a name, phone number, or other contact information, or I'd like to think I'd have reached out to the researcher. Could I have found the information on the internet? Possibly, but I didn’t look, for reasons unknown to me now. Perhaps, since the geneticist knew of no other testing options, the effort seemed a waste. Perhaps the obscurity about what precisely happened to Mom held me back. Perhaps the thought of being part of research studies was overwhelming. Perhaps I even feared what I’d discover. Whatever the case, I once again stayed where I was, having done what I could to determine if I was a carrier of long QT syndrome and could pass it on to my unborn child.

I’ve since learned, from reading Katherine E. Standefer’s book Lightning Flowers: My Journey to Uncover the Cost of Saving a Life, which recounts her experiences with a long QT syndrome diagnosis and the medical equipment placed in her body as a result, the geneticist was likely referring to Dr. Michael Ackerman, “a pediatric cardiologist known to be one of the world’s foremost experts on long QT.”

Though no one in my family has been confirmed to have long QT syndrome, reading the book in 2024 was revelatory in the parallels to Mom and the sheer information Standefer presents about the condition.

So much of my life I’d felt alone in my biological motherlessness, much less being adrift in my uncertainty about what caused her death and bewilderment about long QT syndrome. If bringing up your dead mother isn’t a great discussion starter or conversation continuer during childhood or early adulthood, then not being able to say exactly why she died (and by association, why you’re afraid of dying young) really makes an exchange awkward. Standefer’s book felt like an affirmation—finally, I had found someone who could not only say, I know what long QT syndrome is, but I have it. How many medical professionals have I spoken with who aren’t familiar with the condition? I’ve never knowingly met an average person who’s heard of it.

Unfortunately, I hadn’t read, much less known of her book in 2020, when, on the cusp of turning thirty-two, I not only grappled with becoming as old as my mother ever was, but my fear of unexpectedly dying at the same age—widowing Ben and leaving our child motherless—was amplified by a worldwide pandemic. I sobbed into Ben’s shoulder, “I don’t want to have a birthday. I don’t want it to exist.”

***

I expected my second pregnancy to proceed in a similar manner to the first, but the fetus's size in early ultrasounds placed our baby in the restricted growth category.

The classification sent me spiraling down rabbit holes, concocting ways to help the baby grow (what are the best nutrient-dense foods to promote fetal growth?) and scrutinizing my past choices for causes of the restricted growth (why had I agreed to eat with my family at the café where I likely contracted COVID-19?). All this fretting persisted despite multiple doctors’ assertions there was nothing I had done to cause the situation or could do to change it. My only task was to care for myself and the baby, as any other pregnant person should.

And yet, my body was the one responsible for providing the baby with the nutrients and resources it required. My body was the one intended to guide the child to birth.

Since we were living in a new city, we agreed when my new physician recommended I talk to a geneticist to determine any other testing we should complete in hopes of identifying a cause for our child’s restricted growth. Over the course of our forty-minute Zoom call, the specialist asked extensive questions about my grandparents, parents, siblings, aunts, and uncles. Answering as accurately as I could, I apprehensively fidgeted with my fingernails and wished I had my sister Amanda’s detailed knowledge of our extended family’s medical history. Ultimately, the geneticist did not recommend doing any additional genetic testing on the baby, as she didn't believe it would provide helpful information about the restricted growth.

However, because we had talked extensively about Mom's sudden death and long QT syndrome, she asked if I'd be interested in a noninvasive test that screens 168 genes for a wide variety of genetic heart conditions, one of which is long QT syndrome. She tempered her statement, stating the screening is not all-encompassing, as doctors are still learning about the condition and the heart itself—if I got a negative result, it didn't mean later advances in testing wouldn’t find something. The test also would not provide any insights to our current pregnancy, and insurance was unlikely to cover the screening—it would likely cost a few hundred dollars. Was I interested in taking the test?

My immediate thought was YES, but I didn't speak right away because the opportunity was so unexpected. After gazing away from my phone’s screen to collect myself, I looked back at her and stated, "I've been waiting over twenty years for a test like this, so of course, I want to take it, even if it’s not perfect. What does the process look like?"

Around a week later, a box with instructions and a collection tube arrived. I gathered a saliva sample and sent it back along with my payment of $250. From there, I waited.

Three weeks later, I received a text message with the preview showing, “Your Invitae genetic test results are rea…” My hands began to shake as adrenaline coursed through me. I set my phone on my work desk, screen side down. Here was potentially the answer I’d waited for, for over two decades, and I was afraid to look at it. Though I’d known what I was signing up for, it didn’t hit me until that moment that the results might say yes, I have long QT syndrome, and yes, I have reason to fear dying young, and thus, my children may also be carriers, and I would have to grapple with the implications of those realities: the valid fear of my early death or theirs, potentially an implantable cardioverter-defibrillator (ICD) and other surgeries, likely medications such as beta blockers, and certainly lifestyle changes from the foods we’d consume to the activities we’d partake in. Had I been irresponsible in having children and potentially passing on a condition that would place limits on their lives? How much did knowledge (or lack thereof) limit my life as it was?

***

I waited to open the results until my lunch break when I could go to the privacy of my car.

Before I opened the full text message, I took a deep breath—another surge of adrenaline rushing through me. After apprehensively logging into the patient portal and another focused breath, I downloaded the full report and closed my eyes, heart racing. When I opened them, I saw I was negative for long QT syndrome and everything else the test screened for.

My shoulders, which I had not realized were tensed, relaxed, and I took a more natural breath, before reading every word on the short two-page report. Once I had taken in the information, I called Ben, breathlessly relaying the facts and my relief: “I know the test is imperfect, but it’s still provided more answers than I’ve ever had since my mom’s death.”

I also called Dad and my sisters, in part to share my results, but also, on behalf of the geneticist, to encourage my sisters to also get tested for more accurate familial results. Just because I am negative doesn't mean my sisters or their children are.

***

I still dwell on what my children have genetically inherited from me.

Both Ben and I anticipated our children would have brown hair given my sisters and I all have brown hair and Ben's auburn hair has deepened into brown over the years. However, E’s hair is dishwater blonde, and C has light brown hair that bleaches blonde in the summer.

Along with brown hair, I expected my loose ringlets, but neither of my children have curls past bathtime, and though Ben and my dad have blue eyes, I didn’t consider my carrier status until both girls didn’t have my brown eyes.

There’s a part of me still looking for Mom in my features, and that part also secretly hoped to find her in my children, though they carry only a fourth of her genes. I occasionally glimpse my children out of the corner of my eye, and I'd swear I was seeing a younger version of myself. Depending on the day, time, light, action, and emotion, I can trace their features back to Ben and me. They have my nose. They have Ben’s chin. E has my and my mother's long fingers. My children are young—the oldest just started school—so they will grow and evolve physically, but whoever they resemble, I will love them no less than endlessly.

And yet, each time I listen to Adele’s “My Little Love” and the lyrics question if her child feels the resonance of her past, I wonder what else lies below the surface. Have I passed my grief on to my children? I talk of Mom with them when the situation calls for it, and only to the age-appropriate extent, but I wonder how much they absorb my habits, my anxieties about early death. How do we fully grieve and honor the past as well as move forward without reservations?

What I’m trying to say is motherhood is a matter of intention: your intentions are in your actions, in your genes, and therefore, in your children. The sum of your intentions, for better or worse, is always carried forward by your children, knowingly or unknowingly, and how well your children can read their resonance will depend on the clarity of your answer, or lack thereof. My bodily inheritance is murky with questions. I hope to clarify my legacy for my children.

In discussing the difficulties of parenthood, my father lovingly tells me, “You’re never going to do everything perfectly.”

“I know,” I respond, “but that doesn’t mean I shouldn’t try.”

Whitney (Walters) Jacobson teaches at Concordia College and serves as an assistant poetry and nonfiction editor of Split Rock Review. She also regularly reviews books and conducts author interviews for the publication. She holds an MFA in creative writing from Minnesota State University Moorhead and is working on a collection of essays exploring skills, objects, and traits passed on (or not) from generation to generation. Her current research examines how grief is written about in creative nonfiction.