Feb 19, 2023 | Family, Grief, Parent
By Terri Schexnayder
For millions of people living in America, the death of a child is a tragedy that silently unites many, even presidents. President Joseph R. Biden Jr. has cited his son’s death, Beau, as motivation to run for president and has shared his reflections and experiences on grief and loss in many eulogies. Former President George H.W. Bush advanced global health measures citing the death of his three-year-old daughter, Pauline Robinson (“Robin”), who died of leukemia in the 1950s.
Beyond Presidents Biden and Bush, four other modern-day presidents have lost a child, including Franklin Roosevelt, Dwight Eisenhower, John Kennedy, and Ronald Reagan. According to Doug Wead, historian and author of All the Presidents’ Children: Triumphs and Tragedy in the Lives of America’s First Families, released in 2003, 26 children of presidents died before the age of five, and many more before the age of 30, not including the death of President Biden’s son Beau in 2015 and his daughter, who died in a car accident in 1972.
Oftentimes, these losses occurred before the president held office, but the life-altering impact carried into their days in the Oval office. “When we lose someone close to us, it leaves an imprint — the death of a child leaves an indelible mark,” says Evermore founder Joyal Mulheron. “Experiencing the death of someone you love deeply does not simply leave you. You don’t ‘get over it.’ Rather, your love and both their presence and absence will continue to be a part of your life, and your relationship with them will continue to evolve forever.”
Child loss is uniquely challenging in many ways, as is can impact parents’ sense of meaning, identity, and worldviews. According to Dr. Wendy Lichtenthal, who directs Memorial Sloan Kettering Cancer Center’s Bereavement Clinic, “Child death defies the expected order of life events and can shatter assumptions about how the world works, and thus bereaved parents often struggle to make sense of their loss.”
Mulheron, herself a bereaved parent, says, “After you have buried a child, what could possibly be more painful? In some ways, you’ve already hit rock bottom, so any other subsequent loss — whether that’s running for president or shifting U.S. policy or partisan bickering— nothing will ever meet or exceed the irrevocable pain of losing a child. You have nothing to lose.”
At the Republican National Convention in 1988, when George H. W. Bush was nominated for president, Barbara Bush spoke about how the couple coped with Robin’s death.
“The hardest thing we ever faced together was the loss of a child. … I was very strong over the months we were trying to save her – at least, I thought I was. I was just pretending. But when she was gone, I fell apart. But George wouldn’t let me retreat into my grief. He held me in his arms, and he made me share it and accept that his sorrow was as great as my own.”
Decades later, President Bush’s experience with bereavement after his daughter’s illness and death became motivation to shape his policies around the HIV/AIDS epidemic. In his first speech on the subject in March 1990, President Bush reflected on the question his family once faced when Robin was hospitalized for leukemia.
“We asked the doctor the same question every HIV family must ask – why, why was this happening to our beautiful little girl?” He continued, “There is only one way to deal with an individual who is sick: with dignity, compassion, care, confidentiality, and without discrimination.”
At the State of the Union on February 7, 2023, President Biden introduced his guests, RowVaughn and Rodney Wells, parents of Tyre Nichols, a Black man killed by Memphis police officers during a traffic stop one month earlier. Reaching out to Mr. and Mrs. Wells and other bereaved parents in the audience, including Michael Brown Sr., the father of Michael Brown, a Black teenager who was fatally shot by a police officer in Ferguson, Missouri, in 2014.
President Biden spoke to these bereaved parents and others not only as the President of the United States, but as a fellow parent who had lost both a daughter and a son. “As many of you personally know, there are no words to describe the heartache of losing a child,” he said, “but imagine, imagine if you lost that child at the hands of the law.”
After the death of his 46-year-old son Beau to brain cancer, then Vice President Biden spoke openly about his grief and later wrote a memoir, Promise Me, Dad: A Year of Hope, Hardship and Purpose, about his special relationship with his son.
“When one of your loved ones goes out of your life, you think what he might have done with a few more years,” he wrote. “And you wonder what you are going to do with the rest of yours.”
After deciding not to enter the 2016 presidential race, Biden commented, “Dealing with the loss of Beau, any parent listening who’s lost a child, knows that you can’t — it doesn’t follow schedules of primaries and caucuses and contributors. Everybody grieves at a different pace.”
But the tragedy of losing Beau was not his first loss. Like other presidential leaders before him, he has suffered multiple losses in his life. In 1972, shortly after being elected Senator for the first time, Biden’s first wife, Neilia, and his 13-month-old daughter, Naomi, were killed in an automobile accident. Decades later, during his presidency, his experience offered some insight to grieving parents after the school shootings at Sandy Hook Elementary in Newtown, Connecticut, in 2012 and at Robb Elementary School in Uvalde, Texas, in 2022.
“During President Biden’s State of the Union address two weeks ago, he referenced Beau’s death and its aftermath, but it was vague, and many, if not most, viewers would have missed it,” Mulheron says.
“For example, too many of you lay in bed at night staring at the ceiling, wondering what will happen if your spouse gets cancer, your child gets sick, or if something happens to you.
“Will you have the money to pay your medical bills? Will you have to sell the house?”
According to Mulheron, “President Biden, like many other bereaved parents, particularly those who have lost a child to prolonged medical disease, may experience housing insecurity resulting from the exorbitant health care costs families endure to save their child.”
In a 2016 interview with CNN, then-Vice President Biden shared then-President Barack Obama’s insistence that the Biden’s not sell their home to pay for Beau’s medical bills.
“This is exactly why I founded Evermore. No grieving parent, children, sibling, or spouse should experience housing, job, food, or healthcare insecurity in the aftermath. To build a united nation, we must continue our commitment to family and community during the hardest times. Because that’s when it really counts, whether you’re the president of the United States or our neighbor.”
Other Resources
USA Today: Hoping to see Robin: The loss that forever changed former president George H.W. Bush
USA Today: Hoping to see Robin: The loss that forever changed former president George H.W. Bush
CBS News: Biden acknowledges Tyre Nichols’ parents during State of the Union: “Something good must come from this
The White House: Remarks of President Joe Biden – State of the Union Address as Prepared for Delivery
CNN: CNN Biden says Obama offered financial help amid son’s illness
Oct 31, 2022 | Data Collection, Family, Grief, Parent, Research
Earlier this month, Evermore hosted a conversation with Dr. Emily Smith-Greenaway, a grief and bereavement researcher in California and associate professor of sociology and spatial sciences at the University of Southern California, to discuss her research on bereaved people and her work on the COVID-19 bereavement multiplier.
The bereavement multiplier is a tool used to track how many people have been directly impacted by a COVID-19 death. According to research findings from Dr. Smith-Greenaway, on average, for every death due to COVID-19, approximately nine people have been or will be bereaved. With more than 1 million Americans having died of COVID-19 thus far, that leaves approximately more than 9 million people bereft.
“This multiplier [tool] allows us to really track how many bereavement events there have been in the midst of an ongoing mortality crisis,” says Dr. Smith-Greenaway. “This gives us a really different scale of the height of this mortality crisis by emphasizing how many people have been intimately affected by COVID mortality.”
While the Centers for Disease Control and Prevention measures deaths in the United States, it doesn’t measure how many people are impacted by those deaths. Dr. Smith-Greenaway’s multiplier tool therefore offers an important and useful way to begin to understand the scale and impact of bereavement in this country.
“We can absolutely extend this approach to other causes of death,” says Smith-Greenaway. “What I think is so useful about that is that I expect there will be inversions sometimes – how some less common causes of death may still have an outsized effect in terms of bereavement. It’s a tool we can absolutely use to really get a sense of the lingering effects of certain mortality crises the U.S. is facing beyond COVID.”
Dr. Smith-Greenaway’s research also examines the ways in which social inequality intersects with mortality and how those disparities affect the experience of survivors, at an international scale.
“Inequality and mortality conditions also mean inequality in access to kin and social support and this really unequal burden of bereavement that we see playing out across the globe,” says Dr. Smith-Greenaway.
Dr. Smith-Greenaway’s work found that younger people are disproportionately impacted by COVID-19 deaths.
“Really early in the pandemic, the narrative was that this mortality shock was disproportionately affecting older adults,” says Smith-Greenaway. “We see actually it’s younger people who are bearing the brunt of these losses because they’re disproportionately losing grandparents and parents.”
https:///youtu.be/tmUx2tj6TcA
In a study that followed a group of young children from birth through adolescence, Dr. Smith-Greenaway found that the death of a maternal grandparent played a significant role in the academic success of young boys. Data showed that boys who lost a grandparent earlier on in life – between the ages of five and nine – are significantly more vulnerable to lowered cognitive skills for reading comprehension and verbal and math ability.
“This is really striking because developing these skills on time is really important for youths’ subsequent academic skills and their subsequent behavioral outcomes and academic outcomes,” says Dr. Smith-Greenaway. “Interestingly, we’re not finding anything in terms of young girls.”
Dr. Smith-Greenaway surmises this disparity is a product of the way we typically socialize boys into muting their grief. This type of socialization could be the direct cause as to why research points to these disadvantages in academic skills.
According to Dr. Smith-Greenaway, it’s the impact of bereavement on boys from historically marginalized communities that are really driving the effects seen in the data. Non-Hispanic Black boys and Hispanic boys showed significant impacts to their verbal, math, and reading abilities after experiencing the death of a grandparent between the ages of five and nine.
Dr. Smith-Greenaway’s work also found that Black and Hispanic boys suffered from more severe depressive systems when compared to their white peers after the death of a grandparent.
“There’s also work emphasizing how racial minority boys, in particular, tend to have this ‘suffocated grief,’” says Dr. Smith-Greenaway. “Their grief is viewed as just bad behavior, or acting out, rather than acknowledging that it’s just their very normal reaction to a loss.”
In a global study on the deaths of children under five, Dr. Smith-Greenaway discovered some monumental disparities, not only in child loss, but also in the impact of those losses on mothers. This study found that 30 to 40 percent of sub-Saharan African mothers between the ages of 20 and 44, have experienced the loss of a child – a number that increases to 50 to 60 percent for women ages 45 to 49.
Dr. Smith-Greenaway’s work highlighted striking inequalities in child loss between women in African countries compared to women in other countries. For this research, Smith-Greenaway looked at demographic and health survey data spanning more than 20 years for mothers of multiple age groups in 20 sub-Saharan African countries.
While many initiatives have focused on the disparities in infant mortality between white and African communities, the disparity is even greater when looking at mortality in children.
“In some sub-Saharan African countries, it’s more common to have witnessed a child die than it is to have witnessed all of your children survive beyond the age of five,” says Smith-Greenaway. “This work is trying to attend to the fact that losing a child is this underappreciated dimension of global health inequality that manifests in womens’ lives.”
Dr. Smith-Greenaway’s work also uncovered yet another trend associated with child mortality – intimate partner violence (IPV). In a 2020 study, Dr. Smith-Greenaway concluded that child loss corresponds with a higher risk of intimate partner violence in a number of sub-Saharan African countries. The increase was found, somewhat surprisingly, not in communities where child death was more common, but in communities where it was both less likely and where there was greater parity in education between genders.
Although there is nothing in the data to explain why this increase in IPV exists, Dr. Smith-Greenaway suspects it could be a result of maternal blame for the death of the child.
“It suggests that maybe where child loss isn’t as expected, there’s less of a support system in place for when you do lose a child because it’s just a less common experience in the community,” says Smith Greenaway. “We do see that that comes with an outsized risk of IPV.”
Here in the US, in 2020, the most recent year data is available, the CDC recorded more than 3.4 million deaths in the United States, the most on record. That leaves more than 30 million people in the U.S. recently bereaved, yet the death of a loved one and its implications most often remain invisible.
Thanks to research like Dr. Smith-Greenaway’s, which you can learn more about here, Americans can begin to understand the global breadth of bereavement, and we can establish an increased awareness of these issues so that families may find support when they need it more than ever.
This is why, at Evermore, we work every day to raise awareness and develop our nation’s bereavement care systems. Our work centers around evidence-driven advocacy for the bereaved children and families because no one should be left to bare knuckle their way through the aftermath alone. With millions impacted domestically and around the globe, we can – and should – do more to help our friends, families, and communities.
Oct 24, 2022 | Community, Family, Grief, Parent
Since October is Pregnancy and Infant Loss Awareness Month – which aims to bring more acknowledgement and recognition to the grief, stress, and hardship parents experience after a miscarriage or the death of a newborn baby – we decided to share three stories of loss to contextualize this unique, and challenging maternal experience.
According to the Centers for Disease Control and Prevention (CDC), approximately 20,000 infants died in the U.S. in 2020 before their first birthday – that’s approximately 542 deaths for every 100,000 live births. Another 24,000 babies are stillborn in the U.S. each year. When taken collectively, the annual incidence of stillbirth and infant deaths is approximately equivalent to the number of deaths by suicide. Not to mention that as many as half of all pregnancies end in miscarriage.
“It is an underappreciated and often unrecognized type of loss, particularly for mothers,” says Evermore founder Joyal Mulheron. “Like other forms of loss, miscarriage or the loss of an infant can often create compounding hardship and accumulating stress for the parents. However, over recent years, these losses are receiving increasing attention.”
Hollywood has produced at least two notable films on pregnancy loss. “Roma,” which swept the awards circuit, and “Pieces of a Woman,” which earned Vanessa Kirby a nomination for best actress from the Academy Awards. Both films contribute to the growing recognition that these losses are deserving of social and legal support.
We sat down with both Vanessa Kirby and Academy Award-winning actress Ellen Burstyn, who both starred in the 2020 film, “Pieces of a Woman.” The film follows Martha, a young mother whose life changes irrevocably when her home birth ends in an unimaginable tragedy — her baby is stillborn. Played by Kirby, Martha is forced to navigate difficult relationships with loved ones — and her own emotional journey — as she learns to live with the grief of losing her baby.
https:///youtu.be/fq9qnZXzI0c
“Whatever Martha’s feeling is unknowable to everybody else, and as much as she needs and wants to reach out to other people, I think it’s so colossal that she doesn’t know how,” says Kirby. “I think that’s the frustration that people around her feel, that they can’t get in touch with where she’s gone. Because I think even she doesn’t know.”
As seen in the film, a miscarriage or stillbirth can be a very personal experience — one that can be hard to communicate to anyone who hasn’t experienced it themselves. Although this grieving journey is unique for every mother, there’s often a feeling of isolation for mothers who experience the death of their babies.
“Even though this is a deeply painful movie, we kind of hoped that it would make people feel less alone with the magnitude and the solitary nature of deeply grieving someone,” says Kirby. “The nature of it is having to go through it alone, having to navigate through time, space, and reality, when your reality is completely different and has been shattered. You have to pick up the pieces and try and reform them.”
“Pieces of a Woman” breathes new life into this complicated issue and exposes viewers to an authentic account of the internal and external experiences that mothers must face after losing a baby.
In addition to the emotional toll of such losses, losing a pregnancy or infant is often physically taxing for women, who may experience pain and discomfort from pregnancy loss, or the toll of labor and delivery, only to be followed by the grief of losing a child whose arrival had been joyously anticipated.
Gina Mathias, who lives in Maryland, couldn’t escape the feeling of guilt after her experience with stillbirth. She felt personally responsible for the death of her son — after all, she’d been carrying him and felt she should have been able to feel if there had been complications with her pregnancy.
https:///youtu.be/kq5-8QjhNVY
“Ultimately, I was the only person responsible for Forrest’s life,” says Mathias. “At the end of the day, I was his mother and I was supposed to protect him.”
Miscarriages and stillbirths are often unexpected and unexplained, which can leave mothers and their families with an ambiguous loss to grieve, and with few answers for why the loss occurred.
“It’s really hard living with not knowing why your child died,” says Mathias. “If there was something that you did wrong, if there was something you could have done to prevent it.”
To further complicate the experience, many medical providers are not trained or equipped to aid mothers and their families with the nuanced, emotional challenges of miscarriage, stillborn death, and the death of an infant.
After Mathias’ stillbirth, she was brought to the maternity ward with other birthing mothers. “All around us we could hear other women giving birth and their crying babies,” says Mathias. “And that was just too much.”
Recent data from the CDC show that the U.S. infant mortality rate has continued to disproportionately impact Black women and their families. In 2020, the infant mortality rate for Black babies was nearly 11 deaths for every 1,000 live births, which is double the rate for White babies.
Although it happened more than 30 years ago, the stress and pain of losing two children is still a fresh wound for Jackie Williams, a Black woman and bereavement doula who lives in Maryland.
https:///youtu.be/hQMKizr5LhA
“It’s like a wound that you’ve put a little dirt over, but if a strong wind blows, it’ll blow the dirt away and that wound is resurfaced,” says Williams. “On the dark days, I felt really alone and I felt as though, with [my daughter] Carolyn, I blamed myself for her death for years and years.”
Williams was 20 years old when she lost Carolyn only about five months after her birth. This experience was devastating for a young mother with little access to resources, and Jackie says she became so consumed with the death of her daughter that she began to contemplate taking her own life.
“At that point, that was my lowest,” says Williams. “I wondered — if I take enough pills, I could just die without any pain. Because I wanted to die, but I didn’t want to hurt.”
Williams struggled for years with the grief and pain of losing her daughter until she made the decision to seek out a therapist. The pure act of being able to talk with someone about her experience provided her with the support she needed to begin her healing journey.
Although therapy helped change the trajectory of Williams’s life, there is still much more that can be done to improve the support and care for women who are grieving the loss of a child.
“The deep bonds of motherhood do not simply stop when your child dies,” says Mulheron. “It’s not uncommon for mothers to want to continue parenting their child in death too. This is why we are working to expand legislation and develop other tools to support mothers and families in the aftermath of loss. The nation is woefully behind and there is a lot more work to do.”
Oct 17, 2022 | Community, Family, Grief, Parent
Jena Kirkpatrick with her son, Ellis McClane.
Jena Kirkpatrick was hesitant to visit a medium after experiencing the death of her 19-year-old son, Ellis McClane, who died in a car accident in 2011. But five years after her loss, Jena decided to take a chance and scheduled an appointment.
“That’s something everyone wants for the people who have passed — to talk to them again,” says Kirkpatrick, who also works at Evermore coordinating communications and outreach.
However, Jena felt uncomfortable during her reading. She was keen to the medium’s overly zealous attempts to know her son, and she struggled to make connections between the medium’s messages and her personal experiences. At one point, the medium told her Ellis had become frustrated because she wasn’t catching the references in the messages he was sharing.
“It hurt my feelings,” says Kirkpatrick. “I let myself be vulnerable in the situation, and then I felt a little pissed off that the medium hurt my feelings because I didn’t understand his message. … I just wanted to hear that my kid loves me and he’s okay.”
Psychic mediums claim they can receive messages from the spirits of people who’ve passed on and can act as channels between those who have died and their surviving loved ones. This is why psychic mediums can be an attractive choice to aid in the grieving process. However, every psychic reading is a unique experience — some leave grieving loved ones in more pain and distress, while others provide a deep sense of spiritual connection.
For her part, Kirkpatrick was undeterred by her disappointing experience and decided to reach out to another medium, this time a friend who was beginning to share her clairvoyant gifts with others. To Kirkpatrick’s utter delight, this reading experience was much different.
“We did a couple of readings, and they were phenomenal,” says Jena. “It was much more positive. I felt like she was a lot more kind and empathetic and really took [the reading] in this beautiful and spiritual way.”
It was in this reading Jena finally received the message she had been yearning for — her son is always with her. Jena already had a strong sense that she was receiving messages from Ellis — she sees him in her dreams and often encounters butterflies while in nature — but now she had more reason to believe she really was hearing from her son regularly, in various ways.
“He said, ‘I can always be with you because I’m everywhere, Mom,’” says Jena. “I am always watching out for you, and when you hear me talking to you, it truly is what I’m saying.”
The permanency of losing a loved one can be one of the most perplexing parts of coping with death. It can be unfathomable to accept that you will never speak with your loved one again. This may be one reason why so many people choose to work with mediums after experiencing the death of a loved one, as suggested by research.
A 2012 study found that grieving parents reported finding support groups and psychics as the most helpful coping methods in their grief. The same study also found that about 30 percent of grieving parents received a reading from a psychic within the first four years of their child’s death.
Furthermore, a 2014 study revealed that grieving people experienced less intense grief after a psychic reading when compared to a visit with a mental health professional.
The Szewcyzk family.
Barbara and Walt Szewcyzk visited multiple psychic mediums for readings following the death of their son, Alex Szewcyzk. Alex died by suicide five years ago in their home after years of struggling with his mental health and alcohol use.
Almost immediately after his death, Barbara began to feel as though Alex was still communicating with the family. As they gathered around the kitchen table to discuss funeral arrangements along with Walt’s sister, Barbara suddenly got the feeling that Alex was not a fan of the lavish service they were putting together. Moments later, Walt’s sister’s phone began randomly playing the popular ballad, “Hello” by Adele, even after being turned off.
Barbara took this as a sign from Alex, and soon after, she decided to see a psychic medium.
“I got there, and she started talking about Alex,” says Barbara. “She described his death, and she wouldn’t have known, she couldn’t have known. She gave me a lot of insight and I left there [feeling] pretty comforted.”
Barbara was able to find the confirmation she had been looking for — that Alex was always around her, watching over her.
As she watched her husband struggle with the death of their son, and in an attempt to aid her family through their grieving process, Barbara encouraged Walt to speak with the same medium that provided her initial reading. Walt told Barbara he would trust her, and she booked him an appointment.
“He said to me, ‘I just wish Alex had given me a letter. I just wish he had explained to me what was going on,’” Barbara says of a conversation she had with her husband shortly before his visit with the medium.
Much like Jena Kirkpatrick, Walt had his reservations. His religious upbringing and scientific training made him question the legitimacy of psychic readings. He also worried about the medium’s credibility and authenticity. But after finding himself lost after the death of his son, Walt decided to be open to the possibilities.
During his reading, the medium presented Walt with a letter written with words she channeled from Alex — the letter Walt had always wished he had received from his son after his passing.
“The experience with the medium blew my mind,” says Walt. “I felt wonderful after I left [the appointment]. It reinforced that something is here, and that led me to an organization called DOPS.”
DOPS, or the Division of Perceptual Studies at the University of Virginia, is a “university-based research group devoted to the investigation of phenomena that challenge mainstream scientific paradigms regarding the nature of human consciousness,” according to their website. The research team at DOPS seeks to explore human experiences that may provide evidence that consciousness does survive a bodily death.
“When you tie that in — science with real life experience — you really find that there is something there,” says Walt. “Life does exist and there is a realm around us that we can’t see because of our physical limitations.”
To others curious about whether they should see a medium to connect with a loved one who’s passed on, Walt suggests really looking into the messages that the medium provides, not forcing yourself to make connections where they don’t exist, and being open to a new reality that may call into question your current convictions.
“These mediums — the genuine ones that can bridge that gap — can provide not just healing for those who are grieving, but a renewal of an individual’s consciousness and help them grow,” says Walt. “My grief has been transformed into an energy that drives me to be a better human being. One that I think is truly rooted in the message of Christ.”
Yanie Brewer is a psychic who visits with hundreds of people like Walt and Barbara as part of her work. She says she’s been able to see and hear the spiritual world since birth. At the age of three, Yanie was nearly legally blind. As a result, she could see more of the spiritual world than her own earthly reality. As she got older, it seemed only natural that she uses her intuitive gifts to help others.
“It’s very healing because, on the other side, people only tell the truth,” says Brewer. “It can be very healing for people to understand that their loved ones still have life on the other side.”
Yanie advises people not to let one “bad reading” ruin the opportunity to connect with a loved one. Andrew Witt, who also works as a psychic agrees, and recommends that people seek out multiple readers to find someone they can connect with.
Witt also stated that the quality of a reading can largely depend on the beliefs, expectations, and openness of those seeking answers. He added that it’s also important to work with the medium during the reading to get confirmation that the connection is happening with the spirit of the intended person.
“Nothing that comes from spirits is judgmental,” says Witt. “[The messages] are always very respectful and always very empowering. If [the reading] doesn’t meet those criteria, then that’s something that’s not the real deal.”
Working with a medium after the death of a loved one is a personal choice — one that should only be made when it feels right for you, and if you feel ready to try the experience. If you know friends who’ve worked with mediums, you might first ask them to refer you to someone they’ve had a positive experience with.
Before scheduling an appointment, check out the medium’s website or social media presence to explore whether you feel connected to the person. When you identify a medium that feels like a good match, go in with an open mind and heart.
Nov 14, 2019 | Uncategorized, Parent
How CuddleCot is changing the care system for stillbirth families
The scene opens with a woman, curled up on a hospital bed. A doctor enters, rolling in a white bassinet. “This is called a CuddleCot,” he explains. “It’s a special bassinet that keeps stillborn babies cool so they can stay with their parents a little longer… even after they’re gone.”
Inside is the woman’s stillborn baby, Sophie.
“It’s so …” the mother whispers.
“Morbid?” the doctor responds. “These devices can give you something that nothing else can. Time. It’s not the time you wished you had. Nothing can give you that. But it can give you time to grieve.”
The moment unfolds on this week’s episode of NBC’s year-old drama, “New Amsterdam,” but it’s one that’s playing out more often in real life across the country and around the world. And it’s all thanks to the CuddleCot, an actual device that’s used in a growing number of hospitals and hospices that can provide grieving parents more time with their infant.
Developed by Flexmort, which is based in England, CuddleCots have been on the market for about seven years. “The response,” said Steve Huggins, Flexmort’s commercial director and co-inventor of the CuddleCot, “has been overwhelming.”
In the United Kingdom, every facility that delivers babies has at least one CuddleCot; many have three. And, in the past five years, hospitals in other parts of the world, including Europe, Australia, New Zealand and Africa, have brought in CuddleCots.
The devices were introduced in the United States four years ago. Today, about 1,200 are used in hospitals and hospices here, Huggins said. When he first brought the device to the United States, Huggins said he faced plenty of skepticism about the product. Naysayers wondered why anybody would want it. Today, it’s a different story.
“It’s very much, ‘This is wonderful. This is lovely. I have this amazing story to tell you,’” he said.
How the CuddleCot works
Babies weren’t on Huggins and co-inventor Simon Rockwell’s minds when they launched Flexmort in 2010. The two had worked in law enforcement and emergency and disaster planning. As obesity rates rose, they knew agencies were struggling with handling dead bodies that didn’t fit inside morgue refrigeration. They developed a cooling unit that could be used instead.
As the cooling units took off, a grieving mother shared with them her story about how little time she was able to spend with her own baby and asked them if they could develop something for the smallest among us. The two took up the challenge.
“The CuddleCot was born from that,” Huggins said. “We worked extremely hard to make it as small and quiet as possible.”
The CuddleCot works by continually pumping and cooling water underneath a body, Huggins explained. The movement of the water and the cooling process physically drags away the heat of whatever is on the pad. The device fits inside a bassinet, but parents also have used it underneath the top sheet on a bed or in a stroller.
“It cools the baby down extremely quickly, helping to slow down any change,” Huggins said.
The CuddleCot has allowed parents to spend as much as three weeks with their child, though seven to 10 days is more typical.
“It enables parents to be natural with baby,” he said. “They take pictures, they bathe, they dress, everybody holds baby. They take footprints and fingerprints. The system itself, is so simple to use. It’s so small and compact. In the U.K., and it’s starting to happen in the U.S., families can take baby home into their own environment.”
Not all families will want extra time with their dead infant, Huggins acknowledges. But it gives families, who once spent just minutes with their baby, an option.
“It doesn’t suit everybody,” Huggins said. “It’s about everyone having that choice.”
Anger, then purpose
Erin Maroon would have loved to have more time with Ashlie, her daughter who was born stillborn at full term in October 2015. But, as she recuperated in the hospital from her C-section delivery, Maroon spent less than an hour with her. The room temperature of her hospital room only set the natural processes of death into motion. But the freezing temperature inside the hospital’s cold room quickly changed Ashlie’s tiny features too.
“She was angry and purple,” Maroon remembers. “She completely started to change.”
Maroon read about the CuddleCot on her way out of the hospital. Her first reaction was anger that her hospital didn’t have one. Two weeks later, she decided to start a nonprofit to raise money to buy CuddleCots and place them in hospitals around the country.
“It just snowballed from there,” Maroon said.
Today, Ashlie’s Embrace has raised more than $300,000 and placed 52 CuddleCots in 10 states. Another 16 placements are pending in additional states. Often, families who have benefited from a CuddleCot reach out to Maroon to help them raise money to place another one elsewhere.
“We’ve met with people who did have a CuddleCot who realize the value of it and they want to give back,” she said.
Raising awareness
The recent episode of “New Amsterdam” isn’t the first time CuddleCots made it on the small screen. It’s already appeared “EastEnders,” “Emmerdale” and “Coronation Street,” all popular soaps in the United Kingdom. It’s scheduled to air on BBC’s “Holby City,” a British medical drama, next week.
The production company for “New Amsterdam” reached out to Flexmort about including it in the show. Huggins said they helped as they could.
“We are always pleased when the subject of stillborn is tackled in a TV show as it starts people talking about what unfortunately does happen,” he said. “We thought that the show dealt extremely well with the subject and showed how important it is that the mother has the choice to have time with the baby. Something like this really does let people know that this is totally acceptable and the options are readily available.”
The mentions raise awareness about the CuddleCot, but they also help battle a stigma about what’s right for parents of dead infants.
When the hospital told Maroon that she could keep keep Ashlie with her, she wondered, “Do people do that? Is that weird? Do I sleep with her?”
“We didn’t know what to do with her,” she said. “There’s no handbook for that.”
Now, there’s a growing awareness of the options — and a device that makes those options possible.
“When we first started talking to people about it, it was very much along the lines of, ‘No, I don’t think we need it. Why would the family want to spend time with baby?’” Huggins said. “Things, thankfully, have changed. We have changed the way people deal with deceased babies over here.”
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Sep 24, 2019 | Parent
After his son Reid died in a car crash, Tim Hollister helped transform Connecticut’s teen driving laws. The provisions include earlier curfews, no electronic devices, a two-hour teen driving safety course for both teens and their parents and restrictions on who can ride with young drivers.
Evermore is dedicating this Father’s Day week to bereaved dads who will always be fathers.
A teen driver on an unauthorized joy ride. At night. On a road he probably had never driven before. With teenage passengers who needed to get home by their 10:30 p.m. curfew.
“You had a combination of circumstances that was almost guaranteed to end up in a crash,” said Tim Hollister, whose son was behind the wheel.
And it did. In December 2006 on a Connecticut interstate, Hollister’s 17-year-old son Reid was rushing to get his two passengers home, but never made it. After getting too far into a curve, he overcorrected and hit a guardrail, crushing the left side of his chest. His two passengers survived.
It was the beginning of more teen driving deaths in Connecticut. Nine months after Reid’s crash, seven teens died in six weeks. Connecticut Gov. Jodi Rell quickly formed a task force to overhaul the state’s teen driving laws, which, at the time, were the most lenient in the country, and appointed Hollister to the task force.
Tim Hollister’s 17-year old son Reid died in a 2006 car crash. Nine months after Reid’s death, seven teens died in car crashes in six weeks. Connecticut Gov. Jodi Rell quickly formed a task force to overhaul the state’s teen driving laws, which, at the time, were the most lenient in the country, and appointed Hollister to the task force.
“Basically, in warp speed, … we transformed our teen driver laws into one of the strictest in the country,” Hollister said.
The provisions include earlier curfews, no electronic devices, a two-hour teen driving safety course for both teens and their parents and restrictions on who can ride with young drivers. In the last decade, the law has resulted in a 70 percent reduction in teen driving fatalities in the state, said Hollister, an attorney.
“It’s a remarkable public safety achievement, and states around the country have taken notice,” he said.
A re-education
As the task force wrapped up, however, Hollister continued his study and work to spread the word about the dangers of teen driving.
“When I served on the task force, I got a re-education in safe teen driving and learned that I really, even though Reid had driven crash free for 11 months, that I really had not understood how dangerous teen driving is and why,” he said. “After the task force finished its work, I kept going, reading everything I could get my hands on.”
He launched a blog and eventually wrote “Not So Fast: Parenting Your Teen Through the Dangers of Driving,” which both the Governors Highway Safety Association and the National Safety Council have recognized. A second edition, co-authored with Pam Shadel Fischer, co-founder of the New Jersey Teen Safe Driving Coalition and a longtime transportation safety consultant, came out in 2018.
Hollister also wrote a memoir, “His Father Still: A Parenting Memoir,” which Gayle King endorsed in Oprah Magazine. Proceeds from both books go directly to the Reid Hollister Fund, which supports infant and toddler education in the city of Hartford, Conn.
Can’t just ‘hope for the best’
Hollister said parents often aren’t aware of the dangers of teen driving when their own son or daughter gets behind the wheel.
“Most of the literature that’s available to parents tells you that teen driving is dangerous, but it doesn’t tell them why and what you can do to prevent very predictable situations that most often lead to teen driver crashes,” he said. “It just doesn’t tell them how to work with their teens to make them partners in safety, as opposed to turning them over to a driving school and hoping for the best.”
Hollister recommends a parent-teen driving contract and says parents should be aware of the five biggest dangers for teen drivers that can lead to distracted and dangerous driving. They are other passengers in the car; alcohol and drug use; not planning enough time to get home before curfew; texting and checking electronic devices; and not wearing a seatbelt.
For Hollister, his work on teen driving is focused on preventing another parent from suffering the same grief.
“People ask me, ‘Was it cathartic? Did it help you with your grief?’” he said. “My grief recovery, which was basically all of 2007 and into 2008, was based on the three Fs: faith, family and friends, which I’m blessed to have a lot of.”
“My teen driving advocacy, I think of as a public service,” he said. “I had to put this information out there.”
More information about Hollister and his work is on his website — FromReidsDad.org.
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