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.
Grief teaches a mother lessons she never wanted to learn
My husband Brad came home to tell me what he had learned minutes earlier. Sarah is gone… Our Sarah-Grace. Our beautiful 24-year-old daughter. Dead. With three words and within mere seconds, I was shattered, gutted, disoriented. Any word that implies destruction, pain or confusion is relevant to that moment, but none alone, or combined, capture the devastation and confusion I felt after hearing those words.
Two years later, I’m trying not to evaluate a string of heavy days where my grief is so raw it feels frighteningly new. I remind myself that grief has nothing to do with functioning well or poorly, and the characteristics of it on any given day don’t mean much. Instead, I’ve learned that grief is my constant companion with a rhythm and intensity that’s unpredictable and often overwhelming.
Processing death, understanding grief
After Sarah died, I’d catch myself thinking that I’ll be relieved of this suffering because I’m trying so hard and I’m doing my best. The process of understanding that Sarah is dead, however, has been an agonizing and bizarre evolution.
First, there were the feelings of anticipation. Most days during the first year of grief, I’d tell myself, I can’t survive this. Then, Yes, I can. Just hold on. This will go away. When Sarah comes home. For a second, relief soothed my broken heart until truth slapped me in the face. No! That’s not true. These battles with reality went on for months. I don’t know what made them stop, but one day I simply noticed they had ended. ‘I’ve been defeated,’ I thought. ‘Truth and reality have won. I know the truth about Sarah will never change.’
In more grateful moments, I marvel at the way my psyche works to gently integrate this truth into my consciousness. When the words, Sarah can’t be gone, pop into my head, I recognize that my grief is changing. But it’s slow and subtle, and grief is still wildly and strangely independent of my other emotions, making any day unpredictable.
And these days, I have two kinds of days, OK/fine or bad/terrible. Both are unsettling. On the bad days, I wonder, will I be this way forever? On the OK days, I wonder, does this mean I’m over the trauma of Sarah’s death? I know the answer to both of those questions, but I’m new in this process and I don’t know what the future will bring, so I have to ask.
What I’ve learned about grief
All that I’ve learned as a grieving mother is only vaguely describable and not very teachable.
I remember in the early days being told that my grief will change. After two years, I can say that’s true, but I can’t really explain what’s changed other than, it’s different. Or, how it still feels painful, but in a different way. Or, what occurs to make that happen other than an excruciating breakdown of life and self, followed by the arduous rebuilding of everything. And that’s not very helpful.
So, when I read that people feel their child, or that they carry their child’s heart in their heart, I wonder how that came to be? What am I doing wrong that I don’t have that? Is it even true or possible? What does that even mean?
But I know there’s nothing of what I will come to understand about grieving and surviving the death of my daughter that can be fast-tracked or transferred from one person to another. I know I’ll find answers because parental grief is the most persistent and demanding teacher I’ve ever encountered. The insights are so painfully acquired.
Charting a path toward survival
I can’t imagine ever breathing easily when I think of or say the words Brad came home to deliver. I don’t even write them with ease.
I’m not innately wired to cope with the death of my child. Instead, I must consciously try not to fight against my grief and be, as is often said, present with it. That’s the second hardest thing about Sarah’s death — the daily decision to accept my grief and keep going. But I made a commitment to do just that on the day Sarah died.
That commitment was made during a desperate phone call to Brad’s brother Blaine as the two of us drove to the mortuary. Blaine and his wife, Cheryl, buried their only child, Kyle, 18 years and 5 months before we would bury Sarah. Brad and I had gone to the mortuary with them. We were broken-hearted for their loss and grateful we weren’t in their shoes.
“How do we do this, Blaine?” I sobbed. “How do we even survive?”
“You really have two choices,” he said. “You can either let it completely destroy you or you can try to keep living.”
Somehow, I got through the worst weeks of my life. Later, when time demanded a routine, I was unprepared for what was required of me to heed Blaine’s counsel. The seeming ease and comfort of giving up, rather than trying, has always been alluring.
So, I remind myself of the promise I made when Sarah died: That through every dark, gut-wrenching, lonely day, I will keep trying. I will slog through hell. What I learned in the conversation with Blaine still grounds me. Surprisingly, it’s not that he pointed out that we have a choice. Rather, it was the chilling summation of his advice, spoken with heavy, palpable sorrow. After giving us our two options, he added, “and I don’t have to tell you what I chose.”
I cry thinking about the price that was paid, so he could impart that wisdom.
Resolving to do it again
When Sarah died, I expected my grief and faith to be companions, but grief is lonely. At the end of the day, I’m alone with thoughts, questions and fears that make me an inhospitable environment for the whispers of spirituality. Yet, I still hold on to my faith, knowing a power beyond my own helps me through the minutes and hours.
And each day, I resolve to do it again, though it’s never an easy decision.
Doubt and dread can strike without warning. It’s a constant fight through pain and confusion. But, I want to keep trying, for those I love and for those who love me. And, missing Sarah as I do, I hope and pray that someday, somehow, I too will know what it means to carry her heart in my heart or feel her with me.
Sarah’s death on Nov. 7, 2016 brought devastation, pain and confusion to my life with a power that could have destroyed me, Brad, our two sons and youngest daughter. Today, one of the most important truths that keeps me going is Sarah wouldn’t want that to be her legacy. She doesn’t deserve it either.
So, to honor Sarah and her indelible place within our family, for Brad and our wonderful, grieving children, I do the hardest work I’ll ever do, even when it feels impossible.
Forgotten by most of society, Maryam Henderson experienced two devastating events that ultimately changed her course: a 25-year prison sentence and the death of her son, Augustine.
Maryam was serving her sentence at St. Gabriel’s Louisiana Correctional Institute for Women when she received the news that her oldest son had died in a motorcycle accident. There were no social or mental support systems available for Maryam. In addition to the absence of professional assistance, she could not even take refuge in the support of her prison community. A gesture as simple as a hug from another inmate could result in a minimum 90-day stay in solitary confinement, known as “The Hole.”
Recently, there has been mounting attention surrounding policies and practices for incarcerated women – and for good reason. According to the US Department of Justice, since 1980 there has been a 716 percent increase in female incarceration. In Louisiana, black women are incarcerated four times more than white women. According to the Bureau of Justice Statistics, more than half of America’s prison population has a child under 18. The racial inequities surrounding child loss are staggering. Black Americans are two and a half times more likely to lose a child by age 20 and three times more likely by the time they reach 50-70 years of age.
“I am continuing to live with it: the death of my son and re-entry into society,” Maryam shares. Knowing firsthand the unequal support former female inmates receive, Maryam has channeled her energy and love into supporting formerly incarcerated women through her upstart venture SisterHearts Boutique & Thrift Store. “SisterHearts” is an affectionate term identifying women formerly incarcerated, those still in prison, and others who have supported Maryam since her release.
SisterHearts Boutique &Thrift Store is no small affair. The 15,000 square-foot facility is located in St. Bernard Parish, one of the areas hardest hit by Hurricane Katrina and an integral part of the community. Beyond offering goods ranging from common household items to clothes to furniture, SisterHearts focuses on “decarceration” training by creating a safe space for transition back into society. “Decarceration” focuses on rebuilding identity and empowerment by reversing negative behaviors.
She also has made transitional housing a focus of her efforts. Maryam knows from her experience in the criminal justice system that inmates are required to provide a residential address as a condition for release. For a variety of reasons, many women lose their homes while serving their sentences. To address this challenge, Maryam offers a free six-bed facility for those women who have no home to return to or a safe place to stay upon reentering society.
While she clearly focuses on serving formerly incarcerated women, Maryam also works with former male inmates, who support the store. Michael Coleman has been with SisterHearts since the beginning and has developed customer service, merchandise repair, and management skills.
While Maryam provides practical and emotional support for those much of society has forgotten, she faces common struggles as a small business owner and bereaved parent. “I live with Augustine’s absence daily. Just like a mother’s love, this pain can never be erased. I honor his memory by loving others and working hard every day to strengthen my heart.”
Kevin, a fierce protector of his nine siblings and Nancy and Ray’s son.
A Bereaved Mother’s Day
Dr. Mom, otherwise known as Nancy, is an unflappable mother of ten and leads her large family with grace, instilling a deep love for life in all her children. As a psychotherapist who specializes in addiction and trauma, she has a soft spot for people and falls in love easily, especially with children. Kevin was no different.
Kevin and Nancy.
Kevin joined the twelve-member brood at the age of fourteen. “We got a call from a foster care agency saying he had nowhere to spend Christmas, asking if we could we take him for a couple of weeks,” says Nancy. “So, we did. And we fell in love with him.”
While it took some time to bond, Kevin soon curled comfortably into his new life, even joking that the family must have lost him at birth, and it simply took 14 years for them to find him. “He was able to overcome the experiences of his past and learn to love and trust. It was a beautiful thing to witness,” she says.
By 16, he would bristle whenever he was asked if Nancy was his “real” mom. He told her, “I decided that ‘real’ means you Raise me, you Enjoy my company, you Answer all my tough questions and you Love me — that’s REAL.”
He became a fierce protector of his nine siblings as well as an overall optimist and frequent smiler.
Kevin was the kind of young man who brought his mother flowers for no particular reason. And from the time that he began his first job as a teenager, he would request every Sunday off because “that’s our Family Day day.” With a large family, celebrations are frequent, and four years ago, the day before Mother’s Day, was no different.
The family was celebrating Ricky’s 11th birthday, Kevin’s younger brother, with several friends when 25-year-old Kevin headed to work. Just as they lit the candles on Ricky’s cake, officers arrived with the news that literally knocked Nancy off her feet. Kevin had taken a shortcut to work, jamming to music with earbuds while walking along a Vermont railroad track. He was killed instantaneously by a train.
The Mother’s Day card he had purchased lay on his bed, unsigned.
Anniversaries
The weeks leading up to the fourth anniversary of Kevin’s death have been particularly difficult. “For some reason, the three-year anniversary was easier for me than this one, and there is no rhyme or reason for it… I’ve come to accept that I can’t predict the best or worst days,” Nancy said.
She always prepares for Mother’s Day, birthdays, and anniversaries. She and her husband, Ray, Kevin’s stepfather, take the day off work. “But there are some days I can’t prepare for,” Nancy confides. “There is no explanation as to why certain days just take your breath away and knock your feet out from under you.”
Nancy takes a lesson from another tragic loss in her life. Just before Nancy’s 10th birthday, her older foster sister, Elaine, was murdered. Pictures of Elaine around the house just disappeared.
“We never talked about her — she was completely gone. My parents said they were advised not to take us to the grave or talk about her,” Nancy said. “That was a big mistake. It made it very hard to cope with the grief. My husband and I have made a conscious effort to go the other way — Kevin is not a forbidden topic.”
Nancy talks about Kevin in a vibrant, vivid way and encourages the rest of her children to do the same. He loved to sing constantly, “but was awful,” laughs Nancy, noting that he often put his family in stitches with his off-key stylings. He had a big sense of humor, a habit of blurting out movie spoilers, and disturbingly stinky feet. He had a strong Christian faith and regularly assisted with the sound equipment at church.
Making memories
Each of her children chose a support buddy to be with them through the wakes and funeral. “I think that was the therapist in me,” says Nancy. Friends and family members were tasked with keeping a special eye on the children, whether they needed a drink of water or a person to lean on. “It helped us to know that just for a little while, we could just focus on Kevin and our own grief,” says Nancy.
At Kevin’s wake, Nancy and Ray invited people to sculpt their memories of Kevin out of clay and make two copies — one to stay with Kevin in his coffin, the other to keep. Memorabilia included shakes with straws and two impressions of the sheriff’s badge demonstrating who Kevin was and all the people he touched.
Balls of blue yarn, Kevin’s favorite color, were situated throughout his packed service. Attendees tossed the yarn creating such a giant web that firefighters teased it might be a fire code violation. But it “showed how Kevin connected us all in his short life. We put a piece of blue string in each program as a reminder that Kevin built connections between people and that lives on.”
Struggling to parent surviving siblings
The hardest period Nancy remembers was a few weeks after Kevin died. “The sympathy cards stop coming and people aren’t bringing meals anymore,” she said. “You’re expected to function, and you don’t even know how.”
Nancy couldn’t even go to the grocery store — “people would come over and say, ‘are you okay?’ And you’re thinking, ‘just let me grocery shop, I’m barely hanging on.’ I started grocery shopping several towns away for a while not to have people approach me.”
She also began to feel fear for her other children, that was sometimes overwhelming.
“For a while, I was so scared that they would die that I set up a system with them,” Nancy said. “We picked out the panic face emoji. If I sent it out to them it just meant ‘I need to know you’re alive’ and they would send back kisses and hugs.”
Nancy and Kiki talk about Kevin and railroad safety.
The profound loss challenged her beliefs as a parent. Her catchphrase for all of her children had long been, “I gave you life to live!” She had encouraged them to move fully into their lives and travel. Kevin had done mission work in Mexico. “After Kevin died, I just felt like I changed my mind — I gave you life to be in a bubble, to stay safe and protected from everything. But they would bring my words back against me… It’s hard. What if living life means you’re taking risks that mean you could die?”
Finding purpose
Nancy had gone back to get her Master’s Degree in Psychotherapy and finished her program just weeks before Kevin died. Around that time, she began to feel uncertain that she should go on and pursue her Ph.D.
“It was one of those times when the roles reversed. All of a sudden, Kevin was lecturing me, “Mom, it’s been your lifelong dream to get your doctorate. ‘Don’t give up, don’t stop.’ And he ended that speech with, ‘Besides, I’ve been waiting to call you Dr. Mom.'”
She postponed her Ph.D. program for nine months but realized how heartbroken Kevin would be if she didn’t finish. “So, I started it — and I have felt him with me all along the way,” Nancy said.
While rearranging her bedroom to create a space to study for her spring exams, Nancy found the last birthday card Kevin gave to her. “When I opened it, it said, ‘I can’t wait to call you Dr. Mom.’ It was strange to find that right as I started the exams.” Nancy has stayed open to, and taken comfort in, any sign that connects her to Kevin.
“I’m a logical, scientific person, but I need those signs,” she says. “Sometimes I wonder if it’s just our intense need to feel him with us that makes us read more into something than is really there. If this is the case, I don’t want to know because I choose to keep feeling those connections with him.”
Then her exams fell on the anniversary of his death. At first, it was really painful, but then I realized it was kind of his way of saying, ‘I’m there, I’m with you.’ When I do finish (in 2020), I’m going to change my license plate to Dr. Mom.”
Blessings of love and a life to live
The day after Kevin died, Nancy’s best friend called and told her to look outside. There was a double rainbow. “I like to believe it was Kevin’s Mother’s Day gift to me.” The first time Nancy shared her sister’s murder publicly was in 2012, then “on the way home, a double rainbow appeared,” she says. “Kevin and I talked about that as Aunt Elaine sending her blessing of love.”
As Nancy’s two youngest children, Kiki and Ricky, headed out to do mission work with homeless individuals in Boston, she said “part of me is like, ‘don’t go out on the streets of Boston — that’s dangerous!’ And another part of me feels like ‘live every day fully because you don’t know how many you might have.’ This is the biggest balancing act.”
For now, however, Dr. Mom will continue to look for double rainbows and tell her children ‘I gave you life to live.’
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.”
Forgotten by most of society, Maryam Henderson experienced two devastating events that ultimately changed her course: a 25-year prison sentence and the death of her son, Augustine.
Nancy takes a lesson from another tragic loss in her life. Just before Nancy’s 10th birthday, her older foster sister, Elaine, was murdered. Pictures of Elaine around the house just disappeared.