The scale and reach of the Maternal and Child Health (MCH) Block Grant—with current appropriations of $712,700,000—is indisputable, as 93 percent of pregnant women, 98 percent of infants, and 60 percent of children are touched. While impressive progress has been made in important benchmarks, including the 25 percent decline in infant mortality since 1997, bereavement remains absent from the MCH Block Grant scope. This omission is notable as the agency’s technical advisement manual to state programs mentions death more than 150 times and supports fetal and child death review panels throughout the United States; however, attending to bereavement or grief in the aftermath of these deaths is not included even once in the Health Resources and Services Administration’s (HRSA) guidance.
Bereavement—the loss of a significant relationship by death—is one of the most traumatic stressors a person endures, and extensive scientific evidence domestically and internationally points to the significant, enduring, and life-altering impacts bereavement has on grieving individuals in the short- and long-term. Similar to the MCH Block Grant program, the scale and reach of bereavement in the United States is extensive, particularly as concurrent mortality epidemics—COVID-19, overdose, suicide, homicide, maternal mortality, traffic fatalities, and the emergence of more extreme and deadly climate events—has left no neighborhood untouched.
Five new releases have landed in bookstores and audible programs recently. Each one delivers the topics of grief and loss through unflinching honesty with the author’s personal story—some even include moments of humor. We encourage you to read and share with bereaved family and friends these selected books.
Dina Gachman’s self-help book, So Sorry for Your Loss: How I Learned to Live with Grief and Other Grave Concerns, was released on April 11, 2023. Since losing her mother to cancer in 2018 and her sister to alcoholism less than three years later, the author and journalist has dedicated herself to understanding what it means to grieve, healing after loss, and the ways we stay connected to those we miss. Publisher’s Weekly called Gachman’s book “a poignant, personal exploration of grief.”
Regarding her esteem for Joyal Mulheron and the nonprofit she founded, Evermore, Gachman said, “after going through a traumatic in-home hospice experience with my mom, I was so happy to discover Evermore, and find out that there are people out there trying to reform bereavement care in the U.S. Until I went through it, I had no clue how emotionally, physically, and spiritually depleting and devastating it could be. I was so moved by Joyal’s story, and by the stories of others I spoke to for the book. So many of us out there are suffering through caregiving or the loss of a loved one, with little help, and Evermore’s mission is one I fully embrace. We need more help and more understanding around death, grief, and loss at home, at work, and as a society.”
In an excerpt from Gachman’s chapter about hospice, the reader learns more about Joyal Mulheron’s own struggles with the system after the loss of her infant daughter Eleanora:
Bereavement care in America is broken, if it even exists, says Joyal Mulheron, founder of Evermore, a nonprofit focused on improving the lives of bereaved families through research, policy, and education. … She saw firsthand how “broken” the system was when insurance companies would call her during her daughter’s pediatric in-home hospice and ask how many days or weeks it would be until her daughter passed away. Mulheron said she had twenty-three providers, but she was the one doing the caloric calculations, making sure her daughter was getting enough nutrition to keep her comfortable. … During that time, the company she worked for asked for her resignation, since she was caring for her daughter and could not devote herself to the job as she once had. Now, she is working to change those systems that were so broken for her, and for so many others.
After avoiding her grief from the loss of her father to bone cancer when Laurel Braitman was a child, the New York Times bestselling author eventually faced—and embraced—her pain in her thirties. What Looks Like Bravery: An Epic Journey Through Loss to Love, released by Simon & Schuster on March 14, 2023, is referred to as the “hero’s journey for our times.”
Her literal journey through mountainous regions, encountering life-threatening wildfires, and visiting with others about their grief along the way, Braitman’s powerful memoir “teaches us that hope is a form of courage, one that can work as an all- purpose key to the locked doors of your dreams.”
She shared how she, like so many of the children she met with, felt shame after their loss. “I became a facilitator to help grieving kids who lost siblings or who were ill … What I learned from them was that shame is really just another way to control the uncontrollable.”
Released on April 4, 2023, A Living Remedy: A Memoir by Nicole Chung, a Korean-American writer who was adopted by white parents is personal and addresses an important topic. Chung not only writes about the loss of both her father and mother to illness within the span of a few years but tackles the issues of class and the inequities of medical care in the United States. She witnessed this firsthand, especially when her father was dying, noting his death was “no doubt exacerbated by his lack of health insurance and limited access to care in the small Oregon town” where Chung grew up.
Chung shared an interview with LitHub journalist Hannah Bae. “I felt compelled to write about grief but also this common American experience, where so many people in this country who are not fantastically wealthy end up facing illness or loss without all the resources and support that we need.”
On Grief: Love, Loss, Memory by Jennifer Senior, released on April 4, 2023, is based on an intriguing story around the journal of a young man Bob who died on 9/11 at the World Trade Center. Atlantic writer Senior interviewed Bob’s parents after his death. Years later, she shared with NPR’s Rachel Martin her desire to find the truth behind why the journal ended up with Bob’s fiancé Jen rather than his mother. “[His mother] was so upset and said, ‘How can you give away the last thing our son ever wrote?’ It was – it is a chance to have – to hear his voice one more time, to, in a weird way, be in conversation with him …”
The nagging question for Senior became, why didn’t Jen give the journal back when Bob’s mother asked for it? On Grief answers that and provides a larger conversation about the book’s title.
The Archaeology of Loss: Life, Love and the Art of Dying by Sarah Tarlow, released on April 20, 2023, shares the archaeologist’s shock and grief when faced with the sudden loss of her husband Mark. Called “a fiercely honest and unique memoir,” it reveals how nothing could have prepared Tarlow, after years of studying death in her research, for the loss of someone she loved. About writing her memoir, Tarlow said:
“When you find your husband lying dead, you think you will not forget a single detail of that moment. As an archaeologist, I like to get my facts right … I am excavating my own unreliable memory. I cannot go back and check.”
Jason Edwards grew up in the small town of Graham in West Texas where being gay was not accepted. Pegged as the class ‘gay boy,’ he was bullied relentlessly. His dad tried to spark his interest in sports and Edwards recalled being out on the field spinning around like Wonder Woman. “I was always different,” he said. On June 7, 2000, Edwards’ sister, Bella, was killed in an automobile accident. “It was like a part of me had been cut off—and I was just bleeding,” he said.
Edwards and Bella were queer siblings. They had an inseparable relationship, supporting each other throughout their lives. “I knew if she was a part of my life, I would always be OK. And then, I was not. I was not OK at all,” he shared. Edwards described the physical feeling of his sister’s loss as if his life source had been pulled out of his chest and replaced with an uncontrollable shake. He stopped writing for years, stopped calling his friends and became a recluse. Eventually, he ended up moving to start his life over because he could not handle the memories.
Edwards now lives in Austin, Texas, with his husband Matt. In June of 2015, same sex marriage was declared legal in all fifty states. They were engaged that month and married in August of 2016. “We felt that we deserved the same right to be legally married as anyone else did,” said Edwards. This Pride Month has been about spotlighting our queer brothers and sisters and continuing to highlight the societal shifts occurring in our country.
However, on June 22, 2022, the Texas GOP adopted an anti-LGBTQ platform declaring that being gay was ‘abnormal’, which opposes all efforts to validate transgender identity. This year, Texas lawmakers passed bills banning puberty blockers and hormone therapy for transgender kids and restricting the college sports teams that trans athletes can join. Edwards remains optimistic. “When I am at work, I see parents come in with t-shirts that say, ‘Protect Trans Kids.’ The world is changing, and I think we are winning. It is just an uphill battle.” The fight for bereavement care is an uphill battle as well. Being bereaved with no care only compounds the pain of marginalization.
And there are still so many people who do not understand what it is like to be marginalized. If we all woke up tomorrow and the world was different, men were supposed to be with men and women with women, maybe then people would understand how alienating it feels being the minority. Then people might understand how natural it feels to be with the one you love. Oscar-nominated actor Elliot Page said, “This world would be a whole lot better if we just made an effort to be less horrible to one another.”
Edwards remains optimistic and hopeful that our future has no prejudices, a world where understanding and acceptance replaces hate. He tries to fill his days with beauty, love, friends, art, poetry, music, and good food. “We are all rushing towards death. We just need connection,” he said. “What would happen if we all put our differences aside? We could make real change. If we take the time, we can find something in common with everyone.”
When a child dies, what happens next makes all the difference. Evermore works to de-stigmatize the issues bereaved parents face and advise employers, law enforcement, schools and health care about what grief stricken families need to survive one of the worst traumas a human can experience. Photo by Jonatán Becerra on Unsplash.
Why we need to know more about the hardships parents, siblings face when a child dies
The repercussions of a child’s death extend far beyond the grief of their parents, siblings and family. It’s life altering, of course, but research shows it can even be life ending too.
Just look at the headlines.
In February, longtime soap opera star Kristoff St. John died from heart disease with alcohol as a contributing factor, according to an autopsy. The morning of his death, his ex-wife told Entertainment Tonight that the actor had called her and claimed he was seeing their son, who died by suicide in 2014. “He was just so depressed,” she said.
Hours after her adult son, a victim of the recent New Zealand mosque shooting, was buried, Saud Abdelfattah Mhaisen Adwan died from a heart attack as she mourned his death. A family friend told the New Zealand Herald that she “couldn’t put up with the sorrow and sadness of losing her son.”
And Jeremy Richman, 49, died of an apparent suicide in March, just more than six years after his six-year-old daughter Avielle was killed during the Sandy Hook Elementary School shooting.
According to the Institute of Medicine, losing a child is one of the most significant and enduring stresses an individual can experience. Parents are more likely to face long-term psychological, spiritual, social and physical hardships, according to researchers.
And, with an estimated 400,000 American families grieving the loss of a child each year, these hardships, including family solvency and economic stability, have ripple effects for the entire country.
More depressive symptoms, earlier deaths
Grief might be silent, but it can quickly alter the mental and physical health of a parent whose child has died.
Researchers have uncovered a link between child death and the early death of parents. Danish researchers say the death of a child is associated with an increase in mortality from both natural and unnatural causes, such as accidents, drug overdoses and suicides, in mothers, and an increase in mortality in unnatural causes among fathers.
When a child dies, life for parents becomes an enduring struggle. Even 18 years after a death, bereaved parents reported more depressive symptoms, poorer well-being and more health problems, one study found. They also were more likely to experience depression and marital issues.
The fallout after the death of a child is more than just physical and emotional. Parents who are mourning their child grapple with on-the-job and money issues too.
Researchers are just beginning to examine the full financial impacts, but studies show those ramifications include higher medical expenditures, loss of wages or employment, loss of productivity and reduced future income.
The Family and Medical Leave Act of 1993 allows covered employees up to 12 weeks of unpaid leave to care for a newborn or a spouse, child or parent with a serious health condition before they return to work. The law, however, doesn’t give parents the right to take time off to grieve the death of their child or even plan a memorial. And employers aren’t doing much better. They tend to give their employees just three or four days of paid leave when a child dies.
So it’s no surprise that one study found that the economic effects are “substantial,” citing costs associated with funeral and medical expenses, along with “presenteeism” at work. That’s when a person goes to work, but isn’t as productive because of sickness, injury, anxiety or, in the case of bereaved parents, grief.
Sibling impact is immense
Siblings also face an uphill battle as they process the death of their brother or sister and witness the grief of their parents. The Handbook of Bereavement Research: Consequences, Coping and Care says that siblings can experience “agitated depression, chronic illness, enduring and intense clinical reactions, such as guilt, and significant disturbances in self-esteem, job and school performance and interpersonal relationships.”
In fact, a study of more than 5 million people in Denmark found that when a sibling dies during childhood, their brothers and sisters face a stunning 71 percent increased risk of death from all causes. Those higher risks are especially predominant during the first year after a sibling’s death and among siblings of similar ages and the same sex.
And that’s just what we know.
Despite the profound repercussions to families and communities when a child dies, there’s no comprehensive review of child loss literature. No national data has been collected. No universal clinical guidelines exist to help those who are suffering. There’s not even an accrediting body or treatment standard for grief therapists.
We must do better
At Evermore, we’re working to raise awareness, money and support to address the difficulties families endure when a child dies. We look forward to highlighting the stories of researchers and groups who are effectively supporting families and spotlight areas where more help is desperately needed.
“There was no help for me,” said Edwards. He found his anger and sadness to be something unlike anything he had ever experienced in his life. 