As another decade comes to a close and Evermore marks its fifth year working to improve bereavement care in the United States, we have reason to celebrate 2019.
Here at Evermore, we made big strides toward building our team and raising awareness about the need to support grieving parents. Meanwhile, across the country, new initiatives and research moved forward the conversation about how to support the bereaved.
Evermore in 2019: Advocacy and awareness
Julie Kaplow, PhD, ABPP (left)
Wendy Lichtenthal, Phd
We were thrilled to add two renowned experts on grief and bereavement to our Scientific Advisory Council. Wendy Lichtenthal is director of the Bereavement Clinic at Memorial Sloan Kettering Cancer Center. Julie Kaplow serves as director of the Trauma and Grief Center at Texas Children’s Hospital.
At the same time, our burgeoning advocacy network began to focus on three priorities as we seek to push the needle forward on new policies and supports for those who are grieving. The advocacy network is working to:
Increase research funding so we can better understand who is impacted and how to help.
Grow family support programs across the country to meet families where they are, regardless of race, income or geography.
Boost funding for professional education, development and support to ensure a more qualified, skilled workforce; bolster coping skills; and decrease high rates of suicide among these professionals who respond to traumatic events, like bereavement.
We also were laser focused on raising the national conversation about grief and bereavement. In November, in fact, the Wall Street Journal published Evermore Executive Director Joyal Mulheron’s letter to the editor about the need for companies to better accommodate grief.
“Job protection for bereaved parents seems reasonable,” she wrote in response to a story about how employees juggle work after a loved one dies. But, she pointed out, it’s not considered a qualifying event that allows for leave under the Family and Medical Leave Act.
As we work hard to improve the lives of those who are grieving, we’ve also been pleased to play even a small role in efforts around the country and world to help families cope with a death.
Bereavement Care in 2019: New support, vital research
As we focused on our own work at Evermore this past year, we also were thrilled to witness these notable steps forward in bereavement care that will only support our work to continue to push for more assistance for those who are grieving.
Bea’s Law passed in Seattle
In June, the Seattle City Council passed Bea’s Law, which extends paid family care leave benefits to city employees when their child dies. It is very likely the first paid bereavement law in the nation and a model for lawmakers elsewhere.
The ordinance is named after a city employee’s infant daughter, who died just 36 hours after being born. Bea’s mother was only able to take time off after her daughter’s death by borrowing paid leave from her co-workers. She brought the issue to the attention of city leaders, who made the bold move to make a change.
“Bea’s parents Rachel and Erin are honoring their daughter in such a powerful way. On behalf of bereaved parents everywhere, I thank them and Seattle’s City Council for drafting and passing a landmark law that can be an example for elected leaders across the nation,” Mulheron said at the time.
CuddleCot featured in New Amsterdam
In November, “New Amsterdam,” NBC’s popular hospital drama, showcased a product that’s changing the care system for stillbirth families — the CuddleCot. Developed by Flexmort, which is based in England, the CuddleCot has been on the market for about seven years. The device, which is small enough to fit inside a bassinet, works by continually pumping and cooling water underneath a body. The movement of the water and the cooling process drags away heat from the body, slowing down any change. It gives parents more time with their stillborn baby.
In an interview with Evermore, Steve Huggins, Flexmort’s commercial director and CuddleCot’s co-inventor, said he was thrilled for the opportunity to showcase what’s possible for parents grieving a stillbirth on TV.
“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,” Huggins told us. “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.”
FMLA bill wins bipartisan support
For years, two fathers — Kelly Farley and Barry Kluger — have been pushing lawmakers to approve the Sarah Grace-Farley-Kluger Act, which would update the Family and Medical Leave Act and allow parents to qualify for unpaid leave when a child, who is under the age of 18, dies. In February, for the first time in eight years since the bill’s original introduction, it received bipartisan support from both the U.S. House and the U.S. Senate.
Few want to dwell on death and dying, especially when a child is involved. Sadly, the funding and research required to study the impacts of death and grief on the living has been slow to come. But that’s starting to change. In the last year, researchers shed some important insights on death and grief and there’s more to come in 2020.
Research published in the October issue of Social Science & Medicine found that the death of a child has “lasting impacts” on parents. In fact, bereaved parents had a 32% higher rate of mortality than non-bereaved parents, according to the report.
And in June, research in the Journal of the American Medical Association noted a 30% spike in suicides in the United States, including troublesome increases among adolescents, in particular.
As we carry forward into a new decade, these data points will only help us as we continue to push for better policies, more support and increased visibility into an issue that touches us all.
As we look toward the next five years, we hope you will consider joining our movement, sharing our work or volunteering in your communities. To bring bereavement care to America, it will take every last one of us.
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.”
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.
Also read:
Am I Still a Father? — After his son Jon’s death, Ron Kelly helps other fathers live with their grief.
Kelly Farley and Barry Kluger are the dads behind the Parental Bereavement Act.
Evermore is dedicating this Father’s Day week to bereaved dads who will always be fathers.
Kelly Farley and Barry Kluger met because of a horrible coincidence: They knew what it was like to mourn a child.
For Kluger, it was his 18-year-old daughter Erica, who died in a car crash in 2001. For Farley, it was two children — his daughter Katie, who died by miscarriage in 2004, and his son Noah, who was stillborn in 2006.
The two met several years later after Farley launched a blog that covered his own experience grieving the death of his children, and Kluger invited him on his talk radio show.
As they chatted about what they both had been through, the two fathers started talking about finding an issue they could work on together. That discussion eventually turned to better bereavement leave for parents mourning the death of their child. Soon, they became the dads behind the Parental Bereavement Act.
“Your employer will give you three or five days of bereavement leave, if you’re lucky. That’s just not enough time. You bury your child, and you’re expected to get back to work the next day. We didn’t think it was realistic.”
Updating FMLA
Right now, the Family and Medical Leave Act gives eligible employees 12 weeks of unpaid leave to care for a newborn or a sick family member, but not to grieve a child who has died. And private and public employers aren’t doing much better. An industry survey shows that 69 percent of employers give parents just three days off after a son or daughter dies. It’s barely enough time to plan a funeral.
In 2011, Farley and Kluger crafted the Parental Bereavement Act, an update to the Family and Medical Leave Act that would allow parents to qualify for unpaid leave when a child, who is under the age of 18, dies. Twelve weeks, they say, is not enough time to fully mourn a child, but it’s a start.
“It gives them time to assess what has happened to them and, maybe, start the grieving process,” Farley said.
Not so fast
By the summer of 2011, the two dads got some great news. Sen. Jon Tester, a Democrat from Montana, introduced the bill in the Senate. They hoped for quick action, which hasn’t come. But the bill has continued to get backing from lawmakers through the years. And, in February, it received bipartisan support in the U.S. House and U.S. Senate.
Supporters said it was time to help grieving parents. Senator Martha McSally, a Republican from Arizona and a co-sponsor of the bill in the Senate, stated in a news release:
“Parents coming to grips with the loss of a child should not have to worry about anything other than taking care of themselves and their loved ones,” said . “It is critically important to ensuring mourning parents have the peace of mind to be able to take the time they need while going through the grieving process.”
Representative Don Beyer, a Democrat from Virginia and a co-sponsor of the House bill, added in his press release:
“Expanding the FMLA to include parental bereavement is the most compassionate action we can take to do something, no matter how small, to help bereaved families. This legislation is a good start to make a positive change and I’m proud to support it.”
The latest endorsements make Kluger and Farley hopeful once more.
“We continue to build momentum and support, and a couple of weeks don’t go by without another senator or another representative signing on,” Kluger said. “We’re hopeful, but we’re looking at the bigger picture because there are so many people who have a stake in this.”
Uphill battle
Despite the bipartisan support in both the House and Senate, the two know that they still have an uphill battle. As the country grapples with an opioid epidemic, mass shootings and other pressing issues, helping bereaved parents isn’t top of mind for many.
Kluger and Farley continue to build momentum and support, and say that a couple of weeks don’t go by without another senator or another representative signing on.
“Bereavement leave is something where people say, ‘That’s a pretty good idea,’ but … the passion is not there,” said Kluger, who wrote a book about his daughter and her death called “A Life Undone: A Father’s Journey Through Loss.”
But, they say, it’s still worth the fight.
“I made it through the dark tunnel, and it is my responsibility to be an advocate for parents who follow in our footsteps,” said Farley, who now travels the country to work with grieving fathers and is the author of the book, “Grieving Dads: To the Brink and Back.”
Say something
To move the bill forward, Farley and Kluger are encouraging more people to speak out. So far, through an online petition, more than 120,000 people have sent messages to their lawmakers in support of the bill. There, parents also are sharing their own experiences after the death of a child.
“Three years ago we lost our first born. My husband received one weekend, then back to work,” wrote one mother. “How can you return to work when your mind and heart are somewhere else completely. We needed more time!”
Another mother wrote that her child’s father was fired for missing work to pick up their son’s ashes.
The two dads also encourage people to directly contact their representatives and share their own stories about why they support the bill, so that it gets the attention it deserves.
“I’m not discouraged,” Kluger said. “But I’ve learned the way it works. It’s not a sprint, it’s a marathon.”
Also read:
Am I Still a Father? — After his son Jon’s death, Ron Kelly helps other fathers live with their grief.
