1. Vincent awoke from a nap...
  2. 25,000 infants like Vincent die every year
  3. Savino
  4. Holding Jeremiah
  5. Holding Vincent
  6. Memory Boxes
  7. “I wouldn’t wish this pain on my worst enemy.”
  8. Zukowski
  9. Not Ready for Support Groups
  10. New Children
  11. "It never goes away, it just gets different."

A Different Kind of Grief

A Different Kind of Grief

The Sperings cradling their stillborn son, Jeremiah, at Holy Redeemer Hospital.  (Photo courtesy of Dola Spering) 

Twelve-day-old Vincent awoke from a nap on a Sunday afternoon and cried.  His mother, Dola Spering, picked him up to feed and change, but as she walked to the changing table, he went limp in her arms.

Vincent, born early at 36 weeks, hadn’t been eating much since he came home from an eight-day stay in the neonatal intensive care unit where he had received treatment for underdeveloped lungs.  Just the day before, he had also been lethargic, but doctors reassured the Sperings over the phone that there was nothing to worry about. He was fine.   

Spering screamed for her husband as she held the unconscious infant.  He wasn’t breathing.  She thought he was dead.  “It was very surreal,” she recalled, “He was like a ragdoll almost.  But I’m telling myself, ‘He’s got to wake up.’”

Her husband, Tony, ran to her side and attempted to revive the baby, pumping his little chest with two fingers and blowing into his mouth as she called 911.  The paramedics arrived quickly and as they drove to the emergency room behind the ambulance, she kept thinking, “We can’t go through this again.  How could this happen again?”

Vincent Joseph Spering, whose name they had picked because it meant ‘to conquer’, died early that morning, June 15, 2009, of a staph infection in his mother’s arms at the Children’s Hospital of Philadelphia.

Just 13 and a half months previously, another son of theirs, Jeremiah Joseph Spering, had been delivered stillborn at the Holy Redeemer Hospital, about 18 miles northeast of downtown Philadelphia.

* * *

According to the Center for Disease Control and Prevention (CDC), approximately 25,000 infants like Vincent die every year in the United States before their first birthday.  This means approximately six out of every 1,000 babies born alive will die in their first year of life.  Fifty-seven percent of these deaths occur because of birth defects, prematurity, Sudden Infant Death Syndrome (SIDS), maternal complications during pregnancy and injuries from accidents.

First Candle, a leading nonprofit organization dedicated to raising awareness about stillbirth and SIDS, approximates that another 25,000 babies are delivered dead every year in this country, or 70 a day.  The CDC reports similar numbers. 

First Candle estimates that one in every 150 pregnancies will end with the death of the fetus, with almost 50 percent occurring within weeks of the due date. 

Nearly two-thirds of all cases of fetus deaths remain unexplained because autopsies are not required by law, leaving the decision whether to have one up to the parents; many opt out.

While quick to emphasize that bereavement is unique to individual circumstances, Deborah L. Davis, a developmental psychologist who wrote the book "Empty Cradle, Broken Heart: Surviving the Death of Your Baby,” said that there are several ways in which parental grief differs from other forms. 

First, she explained, the death of a child violates the natural order of life.  Parents are not supposed to outlive their children.  Second, parents instinctively want to nurture and protect their young. When a child dies, there is often a sense of guilt, even if the death was unavoidable. “It’s natural to believe that there must have been something [the parent] could have done to save the child,” she added. Finally, the death is often experienced as several losses, not just one.  This is what nurse Judy Friedrichs, from the Rush University Medical Center in Chicago, calls the “loss of hopes and dreams,” which entails a sense of being robbed of a future. Friedrichs is a Fellow in Thanatology, the study of death and grieving, which is a professional certification awarded by the Association for Death Education and Counseling.  She added that these wishes and expectations begin to develop the moment parents find out about the pregnancy, as though one’s child has already been born and become part of the family. 

* * *

“It was like the worst panic you can ever imagine,”remembered Bernadette Savino as she described how she felt when the youngest of her three children, a four-month-old named Scarlett, died in July 2012 from SIDS.  With dark hair, blue eyes and freckles, Savino looks younger than her 33 years, and, at 4-foot-11, she is smaller than the average Philadelphia police officer.

This cell phone photo was the last photo ever taken of Scarlett before she died. (Photo courtesy of Bernadette Savino)

She reached her babysitter’s house less than two minutes after receiving a telephone call that her baby had stopped breathing.  “I felt like I couldn’t breathe myself,” she recalled about waiting for the paramedics while the babysitter did CPR on her daughter who had turned blue. “I’m like, I’m going to die.  I am dying.  It physically felt like pain, like life was leaving my body.” Scarlett Savino was pronounced dead on arrival at the hospital.

In the months afterwards, Savino suffered severe anxiety and insomnia.  “I only went to sleep because I physically couldn’t stay up anymore,” she said.  The only thing that provided relief, and only sometimes, was the clicking sound of her late daughter’s automatic swing. Before Scarlett died, Savino would get up early to send her older children to summer camp and then lie on the couch and relax, listening to Scarlet as she napped in the swing seat.  The rhythmic sound calmed Savino. 

* * *

Many hospitals and medial caregivers encourage bereaved parents to “say hello before saying goodbye” by cradling the little body in order to create memories.  This was not standard practice before the 1970s, when hospitals strongly discouraged or even disallowed bereaved parents from even seeing the child, for fear of lasting psychological trauma.  “As a result [at that time],” said author Davis, “many parents felt like their grief was compounded by being forced to say ‘goodbye’ even before they had a chance to say ‘hello.’”  Parent advocates and medical caregivers fought for a change in these policies.   Since then, an overwhelming number of studies have shown that holding the body can be a cherished experience. It allows parents, explained Davis, to see whom they are grieving and express their love in a tangible way.

“Instinctively people just understand that this is their baby and they want to say ‘hello,’” said Denise Paul, a volunteer grief counselor at Holy Redeemer Hospital, who speaks slowly with a measured, soft tone to her voice.  She is the leader of the local chapter support group that meets at that hospital, run by Unite, Inc., a nonprofit organization.  Paul was called to counsel and support Dola Spering after the ultrasounds confirmed her baby, Jeremiah was dead.

After a delivery via C-section, the hospital wrapped stillborn Jeremiah in a blue blanket and a blue and white crocheted hat. Spering and her husband were told they could hold the body as long as they wanted. 

They cradled him for five and a half hours, until around 4:30 a.m. 

“We held him and we kissed him,” Spering recalled of holding her son that night  “He just looked, for the most part, like he was sleeping.  So it was very strange that he wasn’t going to open his eyes [and] that he wasn’t going to cry.  All those things that I had looked forward to so much for months weren’t going to happen.  It was surreal.”

Because they hadn’t planned on this moment, all they had was a disposable camera that her mother-in-law had bought in a rush at a drugstore.  They shot a roll of pictures.  Later, they wished they had brought their digital camera from home so they would have been able to take more.  “It may seem kind of strange,” Spering said, “but I wish now that I would have taken a picture of him without his diaper on, taken a picture of his feet, taken a picture of his hands and taken a picture of his head and his hair.  I wish I had done all of that.”

Most of the pictures they did take depicted Spering, her husband, her mother and mother-in-law embracing and kissing Jeremiah.  The adults’ eyes appeared red and puffy, and aside from Jeremiah’s exceptionally deep red lips and a slightly blue, bruised complexion, he looked like a tiny living person taking a nap. 

The hardest part for Spering was giving him up. Yet, after five hours, she felt too emotionally drained to go on any longer. She had been without sleep for over 24 hours.  She handed Jeremiah back to the nurse who had been waiting outside their room for them to call her.  Spering hoped that if she went to sleep, she’d wake up to find it was a bad dream.  

Dola Spering and her husband kiss Jeremiah. This was one of the photos they took to remember their son with a disposable camera purchased from the hospital gift shop. (Photo courtesy of Dola Spering)

A little over a year later, Spering and her husband found themselves holding onto their second dead son, Vincent, in a large room next to the Philadelphia Children’s Hospital Neonatal Intensive Care Unit, full of chairs that faced each other.  The room made her uncomfortable, although she struggled to describe what was so off-putting.  Holding Vincent felt stranger this time because they had known him for almost two weeks. 

The hospital asked if the pair wanted to bathe the body, but they declined.  “We’d already given him a bath at home.  We’d bathed him when he was alive [and] we have pictures after and during his bath,” she said.  

The hospital had bundled Jeremiah in blankets that made him easy to cuddle, but Vincent was still hooked up to IVs and tubes.   And he smelled odd, she said.

“He didn’t smell like a baby.  It was almost like he smelt like death… I remember the smell more than anything else.” 

* * *

The creation of memories and mementos forms a critical part of the grieving process, explained Reno from First Candle.  It is now considered ‘standard care’ at many hospitals to provide memory boxes for parents who experience a stillbirth or a death shortly after delivery.  The boxes had become cherished for all of the bereaved mothers I met. 

The Holy Redeemer Hospital offers a padded, fabric-covered box colored ivory or turquoise green.  It opens in flaps at the top and can be tied shut with a ribbon.  Dola Spering’s was turquoise.  Inside the parent finds a knitted hat and white flannel outfit with pastel patterns sized from XXS to fit a 16-week old fetus to XXL to fit a full-term newborn.  If the child had hair, as Jeremiah did, an envelope is provided for a lock.  Jeremiah’s tufts measured half an inch long and were scattered in the zip lock bag inside the envelope.  Also included are prints of the hands and feet; a card with the birth day, name, size and weight; the tape measure used; the hospital bracelet and a heart-shaped pillow, about three inches across, with which the baby can be photographed.   The nurses also print a copy of the naming ceremony program and write condolences on a card.   Photos taken by the grief counselor or nurses at the hospital lie in the box as well.  If it fits, the infant’s swaddling blanket will be included, or given separately.

Jeremiah wearing the hat and wrapped in the blanket provided by the hospital.  This photo, and the blanket were both kept in Jeremiah's memory box. (Photo courtesy of Dola Spering)

“These [objects] are all considered to be linking objects,” Paul explained, “so that anything that touched the baby goes back in that box.” 

Dola Spering had placed Jeremiah’s memory box in a bigger black wooden trunk with leather snap buckles, where she added other objects that reminded her of her son.  She hadn’t gone through this box in years before the day I interviewed her at her home.  As she took out each keepsake, she delicately held and looked it over for a moment, remembering its story, before placing it carefully on the table in front of me.  Inside were a brightly colored zebra rattle toy, a dried white rose from the gravesite, ultrasound pictures, sympathy letters from her students at the high school where she teaches science, his funeral cards, a memory stick of pictures of the funeral receipts from the service, and a copy of Jeremiah’s autopsy report.

This last item made her voice crack. “I can’t go back through this,” she said, breaking eye contact with me as she clutched the thick report in her hands.  The detailed section about his hair particularly upset her, but she didn’t elaborate.  Her husband and she had read the report carefully at home after they received it, but she found it intolerable to do so again.     

Spering also showed me the box that she and her husband had created for their other son, Vincent, which holds a stuffed blue bear, ultrasound images, crocheted blankets and hats, the plastic “patient belongings” bag they received from the hospital, and a stained burp cloth.  The cloth was the only thing that her son had touched that wasn’t washed.  Spering’s mother had unthinkingly laundered Vincent’s clothes, which had deeply upset Spering.  However, her mother had forgotten the cloth upstairs on their bed.  It was the only thing that still carried Vincent’s scent. 

One of the photos of Vincent from his memory box. It was taken on his first day home from the hospital. (Photo courtesy of Dola Spering)

* * *

Overwhelmingly, the parents I met felt that society is too quick to move on and push them to do the same.    “Especially when death occurs during pregnancy or shortly after birth,” said Davis, “the parents are likely to feel isolated in their grief [because] family and friends tends to think, ‘You hardly got to know the kid; what’s the big deal?’” Friedrichs said that some researchers call this feeling “phantom grief” because the parents cannot openly mourn due to social pressure.

At a Holy Redeemer support group meeting that I attended, led by Paul, this sentiment was widely shared.  Parent after parent recounted how friends and family had dismissed their pain. 

Meetings are held every third Thursday of the month at 7 p.m. in a conference room.  Attendees at this meeting sat around four white tables that were pushed together, with boxes of tissues lying atop.  It was near Christmas, an especially difficult time for the bereaved, and the parents made ornaments as a memorial for the deceased.   They wrote notes to their children on colored strips of paper, which were folded accordion-style and placed in clear glass balls or heart-shaped ornaments.   While Paul read a poem that described the different months of the year in each stanza, the parents hung their ornaments on a two-foot tall plastic Christmas tree, on the months their children had died – January, March, May, June, August, November and December.  Seventeen parents were in attendance, more than usual.  Some mothers came alone, others held hands or hugged their partners while they went around the room sharing stories.  Some fathers talked for their wives.  Some parents had been coming for years; others were new.  One Puerto Rican couple had just lost their baby just seven days prior.

“You might feel tempted to punch someone,” co-counselor Liz Steward told the group.  “But remember, they don’t understand.  No one has a right to tell you to stop grieving or how long to grieve.” Steward was dressed in a purple knit sweater and wore a long necklace with two crucifix-pendants, one with stones encrusted in it. She had tied her brown hair into a loose ponytail that trailed down her back.  That night, she brought home-baked pumpkin bread to share.  The food wasn’t touched until the end of the meeting. 

One mother admitted that she did, in fact, punch her best friend from high school, after the woman told her she should have gotten over the death. “It doesn’t matter that it’s been almost four years,” the mother said. “It still hurts every day.”

A father agreed and added,

“I wouldn’t wish this pain on my worst enemy.”

A few weeks after the meeting, Paul told me, “I hear stupid things that people have said, like ‘I know how sad you must be because I just lost my dog.”  Other parents spoke about how friends had encouraged them to just focus on their living children, or to try to have another baby.    This is one of the first things, in the delivery room, that Paul warns couples to expect when they discover that their child is stillborn or will die shortly.  

“I think they try to spare us our memories,” said one support group mother whose baby lived three days before dying. “But I like to talk about my son.  Pretending that he wasn’t here hurts more.”

Another woman said she proudly talks about her deceased son just like the other mothers at work speak about their living children. “If I have to listen to their stories about runny noses, why shouldn’t I get to talk about my son?,” she said.  “I say, ‘if it makes you uncomfortable, you can just walk away.’”

Other parents described how friends avoided them and even failed to send sympathy cards.

Patricia Limongelli, who leads the Brooklyn chapter of the Compassionate Friends support group, said that avoidance of bereaved parents is common among people who fear the same fate.  “I think people who have young children tend to think it could happen to them so they stay away.”  Limongelli knows firsthand.  Before her own son perished in 1994 in a car crash, she had avoided a family that lived a couple of blocks away whose daughter died of Leukemia.  She confessed,

“When I saw her father in the supermarket, I walked down another aisle.”

These feelings are exactly why the support group matters so much to Denise Zukowski, a 35-year-old dental technician in Philadelphia. She had been the second to arrive at the December meeting in baggy sweatpants and a navy blue sweatshirt.  

Tyler James after he died. He is wearing a golden ring, which was a personal gift from grief counselor Denise Paul (something she does for the parents she helps)  Zukowski now wears the ring on a necklace.  (Photo courtesy of Denise Zukowski)

In her twenty-eighth week of pregnancy, she had noticed that still hadn’t felt her son kick. After a trip to the hospital, Tyler James was delivered by emergency C-section but died after only 35 minutes of life of a bacterial infection. Zukowski never saw her dark-blonde-haired son alive because she was still anesthetized from the surgery.  

After her loss, the support group became extremely important and she never misses a meeting.  “I’ve been in a room full of my closest family and friends and I’ve felt so alone,” she said, “and then at the first support group meeting I went to… I had never felt more comforted because these women had lived it. [They] all understand.”  It is the only place, she told me later, where she can feel like she isn’t crazy for reading children’s books to her son’s urn, or for feeling jealous of other mothers who were having healthy babies around her. 

* * *

Some parents require more time before they can even think about attending a support group, because the pain is too fresh to discuss. This is thought to be because the classic Kübler-Ross stages of grief (denial, anger, bargaining, depression and acceptance) often do not apply to parents who experience a stillbirth or infant death.  Instead, experts use the “Symptomatology of Grief,” which was a model originally developed by Erich Lindemann after the Cocount Grove Disaster, a Boston dance hall fire in 1942.  Later, it was applied to Perinatal loss by the psychologist Dr. Glen Davidson.  According to this theory, parents mourning a baby go through four stages.  These are shock and numbness; searching and yearning; disorganization; and finally, reorganization.  This last phase generally doesn’t happen until 18 to 24 months after the death, after the parents have endured the first anniversaries, holidays and other major family events. 

This was perhaps why when I first spoke with Philadelphia police officer Savino just five months after her daughter’s death, she said she didn’t like the support group that she attended at the Holy Redeemer Hospital.  

“Not to sound cold, but I don’t feel like hearing anyone else’s story yet.” 

However, about a month and a half after that conversation, Savino told me that she was considering going to a future meeting.  “Even if I don’t get anything out of it,” she said, “maybe I’ll meet someone whom I can help.”  But, as of the last time we spoke, she hadn’t gone back yet.

* * *

About half way through the support group meeting, co-facilitator Steward, reminded the parents of one important thing.  “The pain will lessen,” she said, “but you will never get over it.  The person you were is no longer there; you have become a new person.  You have to embrace your new normal.”

Many parents that I spoke with mentioned that having older children helped them cope.  They couldn’t hide in bed because they had to take care of their kids.

Dola Spering and her husband already had two older children before they lost their sons Jeremiah and Vincent, and they had always wanted three; but after their losses, they were hesitant to try again.   When she did eventually become pregnant, she was anxious during the entire pregnancy, and the fears didn’t go away after her new baby, Chase, was born.  Instead, her worries mutated into panic attacks, often brought on when the newborn fell asleep in her arms. She would flash back to Vincent going limp. 

My heart would stop for a second and start beating real quick. Sometimes I would wake him up to make sure he was okay.”

As Chase grew older – he is now two - the panic attacks lessened even though she still finds the urge to make sure he is sleeping.  “I check on him in the morning and make sure I hear him breathing before I leave for work,” she said.

Spering said that she feels stronger thanks to time and her Christian faith.  “I never thought I’d get here. There’s still days when I get the wind knocked out of me for whatever reason, but for the most part, I’ve found [healing].”  She is thankful for Chase.  She has created a non-profit organization called “Project Bear” to help other bereaved parents, where she gives each one a stuffed teddy bear. Zukowski received two bears, one for herself and one for her surviving daughter, after she lost her son Tyler.  Spering says she got the idea from the comforting toys her two surviving children received after Jeremiah was stillborn; her daughter got a boy baby doll and her son a stuffed frog.  However, she thought a stuffed bear would strike a more universal note.

“I see it as an opportunity to reach out to other people who are hurting,” she said. “I’ve learned from this, I haven’t let it knock me down.” 

* * *

By her own admission, Savino, the cop, is a private woman, given to a public façade of stoicism. Her mother nicknamed her “Stoney,” she says, because “getting an emotion out of her is like getting blood from a stone.”   Her hair was slicked back in an austere ponytail when I met her in January, lending a controlled demeanor.  

She spoke frankly about finding her “new normal,” while flipping through photos of her beloved little girl that she kept on her cellphone. 

One of the photos Bernadette Savino showed me of herself with her daughter Scarlett.  (Photo courtesy of Bernadette Savino)

 “It never goes away, it just gets different,” she said “so you have to try to figure out how to make it different for yourself.  You have to be honest with what you want, who you are and figure out what kind of life you want after this, because otherwise, you’d just be crazy, so consumed with sadness all the time that you [wouldn’t] function.”

Savino transferred from her patrol job to work shifts for the legal counsel office for the Philadelphia Police Commissioner, in order to avoid dealing with the public on a day-to-day basis.  She also wanted to spend more time with her surviving two children at night.  But, the “new normal” also meant rediscovering what she wanted to do with her free time.   

She had been training to join mounted patrol before Scarlett died. In January 2012, she began volunteering at an equestrian therapy stable on Saturdays, where she teaches disabled children learn to ride.  

She was assigned to work with a specific pony.  On the first day, the animal bit her.  “He is a pain,” she said with a wry smile, “but it was like he was reminding me of how tough I used to be, like, ‘Get your [self] together, remember what you used to do.’”

She continued, “[Volunteering there] helps me remember that everyone has their own struggles and maybe instead of turning inwards to this bitter person, you should really remember to be sensitive to other people too.”

Savino had planned to celebrate what would have been her daughter’s first birthday making dinner for the ill children at the Ronald McDonald house, a program that provides housing for the families of hospitalized children.   However, it was booked, forcing her to postpone that plan for another day.  Instead, on that birthday, Savino is going to get a flower tattoo that says “Hello Flower” because those had been her first words to her daughter.  She had called her “Flower,” because being premature, her daughter Scarlett was like a bud that couldn’t be ordered to bloom. 

She said,

“When you put your kid in the ground, you put yourself in the ground with them. That part of you is gone.  You start building yourself back up again. Maybe some pieces will be from the past.  Some pieces are from that experience [of loss]. Maybe you’ll get some other pieces back in the future.  But the person you were before is totally gone.”

* * *  * * *  * * *

Simone Scully is a journalist based in New York City, but she was born in Minneapolis, MN, raised in Toulouse, France and went to college in London.  She recently graduated from the Columbia University Graduate School of Journalism with a Masters of Science in magazine journalism, where she was awarded the John Horgan Award for Critical Science Journalism by the school’s alumni.  She is currently writing for Audubon Magazine’s website and blog. For more, visit www.simonescully.com