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How can we help families through the first raw pain of losing a loved one? Grief is a normal emotional response, yet disruptions like a death in the family are something we don't train or prepare ourselves for.
I remember how I went from being optimistic that my son would recover to somewhat in denial. How could he die from this? How do we not have the science and technology to make him recover? I will never forget my father-in-law (who was in his late 80s at the time) being so distraught because he could not easily accept that he outlived his 16-month-old grandchild.
The world turned a different color the day my son died. Feelings of defeat and grief and shock soon joined those of guilt and loss of identity. I was no longer the person I thought I was. And my future would never be aligned with what I thought it would be only a month earlier.
I have chatted with and advised many parents grieving over the death of a child from a foodborne pathogen, but I have also met with many parents whose child survived such an event. These children and their families face life-long medical complications and concerns. In some cases, where the child will never live a normal adolescent or teen life, I have talked with parents having guilty feelings over a child that survived ... but who is not the child they had before the illness.
Pain takes on many different dimensions and will result in myriad impacts on parents.
Step one - get through the day.
Step two - get through the week.
Step three - get through the month ...
When talking with parents who have other children, I remind them that they are not only the parent of the child who died, but also of the ones that are still alive. I had a conversation with a crying father once, who was convinced that he could not be a good father to his 2-year-old because he was not able to prevent his 4-year-old from dying. I asked him, “Would your 4-year-old have wanted her little sister to have a childhood that was less than ideal?” That question sparked within him a new way of thinking of his future.
How should we communicate with the community of friends, extended family members, and acquaintances on what to say/do and what not to say or do?
This one is not easy. The deaths of children especially, cannot find any sort of a 'best' time of year, but the ones that take place during the summer and early fall come with an additional level of problems for many. At a time when grieving parents are still dealing with the stinging rawness of their loss, their friends, work peers, and family are planning for and inviting them to social events - most of which include food as a main feature. It is already hard enough dealing with the loss alone, but finding the strength to be social is nearly impossible. Add on to that the layer of people being excited about the very thing (food) that played a starring role in their child's death - that is salt in the wounds.
With Thanksgiving on the horizon, one parent described his anger at his family a couple of months after his losing his child. He ached as he told of how his aunt offered to host the family get together that year, but then asked that he and his family not bring up their kid's death or come to the gathering 'bringing sadness and depression' because it would be a 'downer' for such a time to be thankful. That one still hurts!
Another parent confided in me how hurt she was that she still cannot talk about her son's death with friends, people at work, and even with family. She shared her understanding that people move on, but expressed anger that these same close people in her life simply expected her to move on quickly as well.
For those feeling the loss, how do we help them know that they are not alone?
Along with all the technology and data that industry focuses on as part of the solution for food safety, we cannot neglect the human element. The "Why" behind any purchase or culture or workforce leadership - as well as policy - must include an understanding of the true burden of disease. Advocates like myself and like those who work with Stop Foodborne Illness provide a critical role in making sure that the very people who we trust to mitigate failures in food safety are supported with the names, faces and stories of those who will never recover from a foodborne pathogen.
We must look beyond data and statistics, as well as charts and graphs, in order to drive a mission and culture of food safety. Sharing about the life of a child who perished is a powerful way to not only give strength to those food safety heroes in industry and in government, but also to help grieving parents know that they do not stand alone. Economic policy theory holds that those special interests in smaller numbers will stand to gain no benefit from speaking up. I disagree. The validation of a life, and of a life lost, is priceless. The acknowledgement of a death and of not being able to return to normal is important for those who feel alone.
How can we keep the essence and meaning of a lost loved one alive and relevant? A line from a song has kept me company all these 27 years. In Highlander (yes, the movie with Sean Connery) the soundtrack by Queen included a song tied to the immortal main character's loss of his wife due to her being mortal. A line - "It's always a rainy day without you ..." started to be a repeated track in my head. I held it with great meaning, but that would change over time. Eventually, through my work over the years, new meaning was added - perhaps a new verse to the lyrics. I saw that, through advocacy and teaching and my writing and public speaking, that rain could be seen through every window while I was still productive and constructive, and even successful and fulfilled inside. Rain does not need to stop us from being a parent or a friend or a neighbor or an employee or a leader ... even if it never goes away.
DD/2021
Losing a child is the most devastating crisis one can ever endure. It violates many core principals we humans hold dear: the natural biological progression that children outlive their parents, a belief in a better future for our offspring, faith and conviction in one’s spirituality, striving to find one’s purpose, and hope for a good and ordered existence.
Losing anyone to a tragedy of this kind can take you to a dismal and murky place.
How can one get through the darkest space imaginable? Having already experienced the trauma of trying to rescue your loved one from the ravages of foodborne disease, you now face the enormity of the utmost tragedy in an extremely depleted condition. It may be helpful, for you, to know that you are not alone.
Families experiencing the same outcome as yours often go through an extreme (albeit perfectly normal) range of responses. These emotions will confront and confound you in the days and years ahead. Powerful feelings ranging from utter shock, denial, and yearning to anger, powerlessness, and guilt which overlaps confusion and a profound absence of hope. The ebb and flow within each person surges differently and courses along individual timelines.
Your life is forever changed. There will never be “closure”, because that would mean abandoning to some degree the essence of that life which was lost. There can be, however, reconciliation with this excruciating deficit as you survive a moment, a day, a season ...
Survival comes, in part, by cherishing and preserving the meaning of your dear one’s life. You will honor them by keeping their significance and nature remembered and relevant, allowing their impact to drive you towards a life of consequence.
Hopefully, support will come from all those who love you and any who also grieve your loved one.
Perhaps now is the time to take advantage of professional help such as grief counseling.
Maybe one these excellent links below will provide a resource to you as you find your way forward.
Clarifying your needs, understanding different therapy types, and considering practical factors like cost and scheduling.
Some emotions of grief can be shared, while other intense feelings of loneliness or guilt, may never be put into words.
The Compassionate Friends is here to help and provide support for families who have suffered the death of a child.
From the Open to Hope podcast: a conversation with music pioneer, Jeralyn Glass. Engaging music as medicine.
We don't move on from grief.
We move forward with it.
In this TED Talk video, author and podcaster Nora McInerny shares her hard-earned wisdom about life and death.
To help you navigate unknown waters & provide some insights needed to help you and the person you wish to support.
Creating communities for grieving individuals to connect with others who understand because they too are grieving a death.
Depression is one of the world’s most common and debilitating disorders, and arguably the most undertreated.
Anyone who has lost a close relative or friend knows that the grieving process can be lonely.
Even though others may also have loved the one who is gone, each is mourning the loss of an individual relationship; and each of those relationships is unique.
It may feel as though there is no one who fully identifies with our feelings at a time when we desperately wish someone could fill the emotional void left by the loss.
We were filled with all sorts of emotions ranging from excitement to sadness.
Ashley was the first to know about the new baby, even before her father or brothers. We knew she would be so happy.
She loved babies.
Daniel wanted to make sure we didn’t name the baby Ashley or Rose and that we weren’t “replacing” Ashley. We didn’t want it to seem that we were either.
We were wondering how Ashley would feel about this. Then a song came on which had these lyrics “I need a sign to let me know you’re there” and “I need to know that things are going to look up.” Then came the chorus and the name of the song, “Calling all Angels.”
There was our sign.
We knew things were going to be okay, but we can’t help but get sad when we think that the baby will never know Ashley or Ashley will never know the baby. We know in our hearts that this is the way for our family to move forward. It is a way to heal and to give our family back some happiness.
It is a chance for our kids to realize that not everything in a hospital, or every doctor, is bad. That good things, like a new birth, can happen at a hospital too.
from the experience of Dr. Darin Detwiler
In 1993, an E. coli outbreak at Jack in the Box fast-food restaurants dominated the news in the Pacific Northwest. Like most parents at that time, I had never heard of E. coli. My family, including our 9-year-old and 16-month-old sons lived about 90 miles north of Seattle. Our first thoughts were that we would be safe if avoided eating in Seattle. As the news revealed more information, my precautions grew to include my family avoiding hamburgers.
Finally, we learned that we should avoid eating hamburgers from a specific restaurant. If I were afraid for any one of us, it was for my 9-year-old, thinking that he was vulnerable. My youngest son, Riley, was the child I thought we would not have to worry about because at his very young age he had never even eaten a hamburger and would not any time soon. That did not matter, however, as he became ill with E. coli not from directly eating food contaminated with a foodborne pathogen, but because of person-to-person contamination—from another child in his day care who was sick with E. coli.
While sitting by my son’s bedside for weeks, I came to accept that this was going to be a long, difficult recovery from a horrible illness. I clipped newspaper articles about the outbreak, photos about his ordeal, and even findings from the investigators. Friends and family sent clippings along with “get well” cards. I planned to create an album to use when he was old enough to explain how brave he was and how he overcame incredible medical challenges. I still have many of those old newspaper clippings. And, aside from family photos and video of a young boy being loved and learning how to walk, I have four immortal images burned into my memory from 1993.
The first image is a look in my son’s eyes as he sat on my lap while I held him in his hospital bed the day he was first admitted. At only 16 months of age, he could not understand how his IV bag, hanging at the bedside, was not a bottle that he could hold and drink. Riley wanted to go home. He wanted comfort from his bottle, but he could not have one. With only a few words at his disposal, he kept reaching for the hanging bag of IV fluids and saying “Ba Ba” for bottle.
The second image comes from something I saw on the TV news, as I had been prevented from getting close enough to be there in person. I saw the immediately recognizable characteristics of my son’s face, peeking out from under the blankets and the sides of a basket that was being loaded into a helicopter, as he was about to be airlifted to Seattle Children’s Hospital almost 90 miles away.
The third image is from that hospital’s pediatric intensive care unit, where I saw barely visible portions of my son’s face and body surrounded by medical equipment while in a medically induced coma for weeks. Barely a day after Riley arrived at Children’s Hospital, doctors performed exploratory surgery and removed a large portion of his colon. When the staff brought Riley back to his hospital room, the doctors could not look us in the eyes as they related how bad things were and that they had placed him in a medically induced coma. I painfully remember Riley’s eyes, coated with an ointment, remained closed. His little arms and legs arranged to serve as a bridge between his small body and the web of wires and towering machines surrounding his bed. The little blonde boy, who had hardly been able to walk and talk just a week earlier, now remained medically paralyzed and breathing on a respirator. Over the next few weeks, Riley’s little body, dwarfed by wires, tubes, and devices, developed renal failure, heart problems, and respiratory distress.
The final image comes from when I watched two men carrying my young son in a white coffin on a cold February morning. That coffin was far smaller than a coffin should ever be.
Only 23 days after he became infected with E.coli and later developed HUS – requiring dialysis, exploratory surgery removing a large part of his intestines, and being placed in a medically induced coma - Riley died from a massive brain hemorrhage and multiple organ failure.
Along with the news of Riley’s death, investigators confirmed that he had not eaten any of the contaminated product but became ill through person-to-person transmission from another child who had eaten the contaminated meat.
The landmark 1993 “Jack in the Box” E. coli O157:H7 outbreak resulted in the deaths of four children, including:
• Six-year-old Lauren Beth Rudolph of southern California, who died on December 28, 1992 (Sylvester, 1995);
• Two-year-old Michael Nole of Tacoma, WA, who died on January 22, 1993 (The New York Times, 1993a);
• Two-year-old Celina Shribbs of Mountlake Terrace, WA, who died less than a week later on January 28, 1993 (Kelley, 1996); and
• And my son, Eighteen-month-old Riley Detwiler of Bellingham, WA, who died on February 20, 1993 (The New York Times, 1993b).
The day after Riley’s death, President Clinton called me from a phone aboard Air Force One. The President asked what his administration could do to help parents in this situation. I suggested that perhaps the best course of action would be to let parents like myself help the government make food safer, as I felt compelled to speak up to help prevent others from living with a chair forever empty at the family table.
Aside from family photos and video of a young boy being loved and learning how to walk, I have four immortal images burned into my memory from 1993.
In the years that followed, I consulted with the USDA as an advocate for the “Food Safe Handling Labels” federal mandate. This label, in use now for some 20 years, called for special handling instruction labels to be placed on all raw meat products (referred to as the most significant change in food safety in 100 years). At the request of the USDA, I also worked as a consultant for the USDA’s Pathogen Reduction Program.
My food safety speaking, writing, advocacy, and other experiences over the previous five years slowly made their way into what I taught over the next 15 years in high school history, math, and science classrooms.
In 2004, after earning national certification from the FDA as a Food Science Educator, the Secretary of Agriculture appointed me to two terms as a USDA regulatory policy advisor on the National Advisory Committee on Meat and Poultry Inspection (2004–2007). In this role, as a food safety education expert, I presented before legislators, industry, and national organizations. I also consulted with print/broadcast media. And my writing on food safety history was featured in numerous journals and trade publications.
This work enhanced my teaching in the school but would eventually lead me to explore leaving the classroom. I returned to feelings I had in 1993 when I looked at those newspaper clippings, cards, and letters. Was this my purpose? Would my role forevermore be teaching the history of E.coli outbreaks over and over again while not doing something about the fact that foodborne pathogen recalls, outbreaks, illnesses, and deaths are a regular feature in the nightly news?
So, after 15 years of classroom teaching, I left my job and moved to the East Coast to pursue my desire to work in some capacity to prevent others from suffering from foodborne illness.
I served as the senior policy coordinator for STOP Foodborne Illness (2014-2016) where I represented the organization before a variety of federal, state, industry, and consumer stakeholders. Meanwhile, I conducted and defended my doctoral research on states’ ability to implement federal food policies, such as FDA’s Food Safety Modernization Act (FSMA) of 2011 (Pub.L. 111-353), and the USDA’s efforts to label mechanically tenderized beef.
Today, I am a professor of food policy, lead faculty of a regulatory affairs of a graduate program in food, and an assistant dean at Northeastern University in Boston, MA. I sit on multiple advisory panels, speak across the country and abroad, write a column in Quality Assurance and Food Safety Magazine, and have authored two books - Food Safety: Past, Present, and Predictions and Building the Future of Food Safety Technology: Blockchain and Beyond.
One of the first things I learned after my son died was that the world first took significant notice of the unseen dangers on their dinner plates with the publishing of Upton Sinclair’s 1906 novel The Jungle. Even though Sinclair’s intended message was support for socialism, readers paid a great deal of attention to the chapters in which he described in detail the conditions under which meat was prepared. The impact of Sinclair’s novel on readers can be seen in an excerpt from The London Times Literary Supplement review of the book in 1906, where the reviewer connected Sinclair’s material to its real-world context and validated the truth exposed through the novel’s content. The review reinforced The Jungle as a factual warning and accurately predicted the concerns Americans would continue to face today.
“Unhappily we have good reason for believing it to be all fact, not fiction.…it is with nothing less than horror that we learn it to be true. The things described by Mr. Sinclair happened yesterday, are happening today, and will happen tomorrow and the next day, until some Hercules comes to cleanse the filthy stable” (The London Times, 1906)
While these words still ring true today, they stung me a little harder in 1993. The need to improve food safety took a top priority that year, with newly inaugurated President Bill Clinton not only talking about this issue on live national TV while it was unfolding as he took office (C-SPAN, 1993), but also pressuring the USDA to add inspectors and improve policies. Even with these changes - the most significant since 1906 (stemming from the Roosevelt administrations reaction Sinclair’s novel The Jungle) - failures in food safety have persisted.
Since 1993, we have seen the seemingly uninterrupted cycle of crisis-and-reform through headline after headline of multistate outbreaks and huge recalls involving major labels and national retail or restaurant chains. The early food safety focus on meat and poultry soon expanded to include recalls and outbreaks tied to cantaloupe, leafy greens, sprouts, caramel apples, ice cream, peanut butter, and other produce. Ready-to-eat and commercially packaged goods such as cereals and salads also found their way onto lists of contaminated products.
The Centers for Disease Control and Prevention (CDC) estimates that each year, 48 million Americans become ill from foodborne pathogens, 128,000 are hospitalized, and 3,000 die (CDC, 2018). Since Riley’s death in the landmark 1993 E. coli outbreak, the math shows that over 80,000 American consumers have died from foodborne illnesses, a large portion of which could have been prevented (Mead et al., 1999).
However, I often hear federal food regulators and industry executives make statements that the American food supply is “the safest in the world.” Many experts have criticized these misleading statements as they portray a lesser sense of risk to policymakers and to consumers (Krebs, 2004). The frequency and quantity of meat recalls, along with the number of outbreaks, illnesses, and deaths tied to foodborne pathogens indicate that problems still exist somewhere between the farm and the table.
Many times, even the efforts of those companies and leaders who did everything they could to protect their consumers would be thwarted by improper handling, inadequate cooking, or some other action down the line. We have witnessed news coverage and even documentaries that have highlighted investigations and lawsuits, as well as executives discuss their companies’ stock values fall and, often, rise again.
I often hear the voices of other victims and their families who have also shared the true burden of disease with industry, policymakers, and consumer advocates who also served on committees and boards involved in improving food safety for others. The FDA’s Food Safety Modernization Act (FSMA) of 2011 (Pub.L. 111-353) stands as an example of one of the most significant pieces of food safety legislation made law only because of the hard work of young survivors, parents, experts, victims’ lawyers, and advocacy groups such as STOP Foodborne Illness. Unfortunately, these advances have not prevented some of the largest outbreaks in recent history, such as several multi-state outbreaks tied to a major chain of Mexican grill restaurants, a deadly outbreak tied to major ice cream maker, and the ones tied to Romaine lettuce in 2018 and 2019.
Today, the same companies that tried to avoid me 25 years ago now regularly invite me to speak with them before large audiences and even before their own employees at corporate training events. But the message I send today is no longer solely about the past. My audiences include regulators, inspectors, corporate executives, quality assurance leaders, doctors, lawyers, food industry employees, journalists, fellow academics, students, and consumer groups. I am proud to have testified before Congress, served two appointed terms as an advisor to the USDA, worked with FDA leaders, sat on stakeholder committees, and provided policy leadership for advocacy groups.
Focusing on the past, I became filled with rage over and over when I realized that I took for granted making the world a better place for my son and being able to have the rest of my life to make up the lost time. The past was always something I have held on to, whereas I was afraid to reach to the future. However, by shifting my focus to the future, I have found peace and function, dedication and action. My central message is that we cannot wait for some “Hercules” to come and fix every food safety failure, because “Hercules” does not really exist. Instead, working collaboratively and with the use of new technologies, we can muster the Herculean Effort – the enormous amount of work, strength, and courage – that is needed to prevent failures in food safety and to prevent consumers from becoming harmed and families from losing loved ones to foodborne pathogens.
Still, some of the hardest conversations I have had have been with other parents who later went through what my family experienced long ago.
Sometimes, I talk with parents of children who were hospitalized, but, fortunately, did not die. Though their young children lived through dialysis and surgeries and rehabilitation – many will live with life-long medical conditions. These families also live with fears.
About a decade after my son died, I met the family of a young boy who, at four years old, is one of those fortunate ones who lived after being hospitalized for months from E.coli.
While this meeting left me with a sense of optimism, a return visit a few years later left me with something far more important.
While attending a conference in their city, I was able to meet up for coffee with the mother of that child who was now about four years older. She talked about his progress but was sad to talk about how he has had a difficult time accepting that he cannot use his left arm, as a result of the stroke he had while sick. She talked about how he knows that he cannot play like the other boys in his school.
But then she pulled out a crayon-colored image for me to see. She revealed how her son said how he wished someone at the food company could have done something to prevent him from becoming sick ... and that that person would have been his hero. He did not draw someone in a fancy business suit or in a food industry smock: no hair net ... no gloves. Instead, he drew a superhero - flying and wearing red tights and a cape.
Since that visit, I have shown an image of what he drew to audiences across the country and abroad.
You see, it is one thing to want to make our food supply system as safe as can be. It is another to inspire others to do the same.
Using that crayon drawing of a superhero inflight, I draw attention to the fact that each and every person in my audience plays a role in this Herculean Effort. I stress that they are perceived as real superheroes – even in this age of DC and Marvel movies - in the eyes of those who depend on them to make their food safe. Their work - their actions - are critical when it comes to the future for the lives of so many. There will never be an end to pathogens in our food, but we can change the culture around the future of food safety.
So – what advice do I give grieving parents who ask me how they can start looking towards the future?
First - focusing energy solely on the failures in the past is neither healthy nor sustainable.
And second - supporting and inspiring those who do act to prevent future failures can bring about immeasurable rewards. Our world needs your voices and your passion to help inspire the changes we all need. This is exactly the kind of work, strength, and courage behind any “Herculean Effort.” Mine has been to create a future where fewer families live with a chair forever empty at the dinner table.
I lost my son, yes. But my son did not lose his father.
By focusing on inspiring the future generations of food safety heroes, I find incredible fulfilment, but, more importantly, I also find peace in those opportunities to still be a father to my son.
Resources
Centers for Disease Control and Prevention. (2018, November 5). “Estimates of Foodborne Illness in the United States: Burden of Foodborne Illnesses.” Available at https://www.cdc.gov/foodborneburden/2011-foodborne-estimates.html
C-SPAN. (1993, February 10). Video Clip of “President Clinton Televised Town Meeting.” Available from: https://www.c-span.org/video/?c4506516/clinton-town-meeting
Detwiler, D. (2020a). Food Safety: Past, Present, and Predictions. (1st Ed.). Elsevier Academic Press., Cambridge, MA. ISBN: 9780128182192. Available at https://www.elsevier.com/books/food-safety/detwiler/978-0-12-818219-2
Detwiler, D. (2020b). Building the Future of Food Safety Technology: Blockchain and Beyond. (1st Ed.). Elsevier Academic Press, Cambridge, MA. ISBN: 9780128189566. Available at https://www.elsevier.com/books/building-the-future-of-food-safety-technology/detwiler/978-0-12-818956-6
Kelley, T. (1996). “Chronology of E. coli outbreak.” The Seattle Times. Available from: http:// community.seattletimes.nwsource.com/archive/?date=19960707&slug=233804
King, W. (1993). E. coli victim leaves legacy of awareness. The Seattle Times. Available from: http://community.seattletimes.nwsource.com/archive/?date=19930225&slug=1687443
Krebs, A. (2004). “Debunking the myth that the U.S. ‘Has the Safest Food in the World.’” The Agribusiness Examiner. Available from: http://www.organicconsumers.org/foodsafety/foodmyth040504.cfm
The London Times. (1906). “Literary Supplement: The Jungle.” Microfilm collection, Western Washington University.
The Los Angeles Times. (1993). “Child dies from bacteria; parents had voiced an appeal to Clinton.” Available from: https://www.articles.latimes.com/1993-02-21/news/mn-825_1_town-meeting
Mead, P., Slutsker, L., Dietz,V., McCaig, L., Bresee, J., Shapiro, C., et al. (1999). “Food-related illness and death in the United States.” Centers for Disease Control and Prevention. Available from: http://wwwnc.cdc.gov/eid/article/5/5/99-0502
Penhale, E. (1993, June 2). “A cry for better meat safety.” The Seattle Post-Intelligencer. Page A1.
Sylvester, R. (1995). “Children risk death from burger bug.” The Sunday Telegraph (London), p. 9.
The New York Times. (1993a, February 6). “Jack in the box’s worst nightmare.” Available from: https://www.nytimes.com/1993/02/06/business/company-news-jack-in- the-box-s-worst-nightmare.html
The New York Times. (1993b, February 22). “17-month-old is 3rd child to die of illness linked to tainted meat”. Available from: http://www.nytimes.com/1993/02/22/ us/17-month-old-is-3d-child-to-die-of-illness-linked-to-tainted-meat.html
The Orlando Sentinel. (1993, February 28). “Toddler’s Death Shakes the Nation.” Available from: http://articles.orlandosentinel.com/1993-02-28/news/9302270333_1_detwiler-coli-infection-riley
Sinclair, U. (1906). The Jungle. New York: Grosset & Dunlap. Available from: https://www.gutenberg.org/files/140/140-h/140-h.htm
Stop Foodborne Illness is a 501(c)(3) tax-exempt organization. Donations are tax-deductible to the extent the law allows.
