Mom Jamie Wilson and dad Niguy King hold their daughter Janii, in the hours before her death. (Photo courtesy Todd Hochberg)

Terrah Tillman and her husband had been trying to have a child for five years. After several miscarriages, they had all but given up on the prospect when Tillman unexpectedly became pregnant with a girl, Berlyn, due in early May of 2013.

“It was everything I dreamed of,” says Tillman, a 34-year-old child therapist from California. “I went to prenatal yoga classes. We got so involved; we wanted to do a natural childbirth, so I had a doula and we had a childbirth educator and tons of support.”

A few days after Berlyn’s original due date, Tillman went into labor and called her doula to her home, where she was ready with candlelight and music.

“It was all very pretty,” she says, gently recalling the scene. “Our family was coming in from out of town to see her. This little baby girl had been waited for, for five years, and we were so excited.”

But at the very last minute something went horribly wrong. Tillman felt no movement from the baby and ended up rushing to the hospital. Once there, doctors could no longer locate Berlyn’s heartbeat.

When Tillman and her husband were told Berlyn would be delivered stillborn, they were beyond devastated.

“A specialist came in and I just grabbed her,” recalls Tillman. “I yelled, ‘Please do something, please save her.’”

Before Tillman could get over her complete shock, she was suddenly confronted with new and painful decisions that she couldn’t yet bear to think about. When a nurse first mentioned Now I Lay Me Down To Sleep, she recalls that she hated the sound of the organization’s name.

This is how families usually first learn of Now I Lay Me Down to Sleep (NILMDTS), a national nonprofit organization that provides free remembrance photography of dying or already deceased babies.

NILMDTS was co-founded by Colorado-based Cheryl Haggard and Sandy Puc in 2005, after Haggard lost her own newborn. The group brings in volunteer photographers within hours of the infant’s passing, and the photographers complete post-production work at their own expense. While hospitals often provide their own services or bring in independent volunteers, many families and medical specialists report that the high-quality services provided by NILMDTS and a few similar organizations are invaluable.

Now I Lay Me Down to Sleep co-founder Cheryl Haggard with her son Maddux, taken by NILMDTS photographer/co-founder Sandy Puc. (Photos courtesy NILMDTS)
Now I Lay Me Down to Sleep co-founder Cheryl Haggard with her son Maddux, taken by NILMDTS photographer/co-founder Sandy Puc. (Photos courtesy NILMDTS)

As Sharon Nord, a perinatal nurse and the New York City area coordinator for the organization, explains, the moments surrounding an infant’s passing are typically hazy and disorienting for family members, and of course they will never have the lifetime of pictures people can rely on when an older person passes away.

“The families we assist will never have those pictures,” says Nord. Above all, NILMDTS provides a poignant memory of a child that might otherwise not be celebrated.

Tillman’s sister-in-law had the presence of mind to call NILMDTS and have a photographer meet them at the hospital. But by the time the photographer arrived, Tillman was hysterical and uncomfortable with the idea of having Berlyn photographed.

Tillman turned to a nurse and told her she had no idea what to expect, asking her what Berlyn would look like when she was delivered.

“The nurse said Berlyn would look beautiful,” recalls Tillman, “and just like she was asleep.”

Terrah Tillman's daughter, Berlyn Lee Tillman, photographed by Now I Lay Me Down to Sleep photographer Felicia Rule.
Terrah Tillman's daughter, Berlyn Lee Tillman, photographed by Now I Lay Me Down to Sleep photographer Felicia Rule.

Tillman eventually agreed to a portraiture session, but it was painful for her to witness.

When a baby passes, its skin quickly goes through changes that can be quite jarring to see. Oftentimes these sessions involve moving and positioning the baby, an act that takes great care and attentiveness. Some parents want to watch their babies photographed and some prefer not to. Similarly, some parents want to be in the photos while others turn that option down.

As the photographer did her work, Tillman chose to look away.

*   *   *

Several years ago, when Stacy Rader found out her son Caelan was not going to survive after taking a turn for the worse in the NICU, she immediately dismissed the idea of having him photographed.

Stacy Rader's son Caelan Rivera O’Connor, who passed away in 2008, photographed by Melanie Moreno.
Stacy Rader's son Caelan Rivera O’Connor, who passed away in 2008, photographed by Melanie Moreno.

“The doctor told me about Now I Lay Me Down to Sleep and I had no interest,” says Rader. “I thought, ‘You don’t take photos of these horrible moments in life.’”

But something changed when Rader’s nurse, Eugene, approached her in tears and urged her to have the pictures taken.

Rader, now 39 and Director of Communications at the Colorado League of Charter Schools, says Eugene, who himself had been present at the founding of NILMDTS, told her she would want those photos, that they would represent her legacy.

Rader was so out of it she recalls little of the experience and could barely remember the photographer or even the name of the group. But in time, she grew to be tremendously thankful for the memories.

“Even now I cherish [the photos] and I can remember details that have started to fade with time,” says Rader. “I can smell and even feel Caelan again. I’m so thankful I had the photos done; they’re all I have.”

* * *

Todd Hochberg, 57, a Chicago-based photographer with a background in medical photography, has been a near full-time bereavement photographer for the past eight years. He also teaches and lectures on the subject.

Hochberg is not affiliated with NILMDTS and considers himself a documentarian. He loves collecting vintage photographs, and compares his work to memorial photos made in Victorian times to capture the dead or dying. He believes each of those images and daguerreotypes, often of children and babies, tells an important story.

“I thought I would do what I had seen in the Victorian photographs—portraits or photos with family,” says Hochberg. “But what I discovered was this incredible story of love and loss and that’s why I brought the documentary approach to these images.”

Hochberg has received grants and donations to support the work he does, which is free of charge for families. In 1997, he founded his own organization, Touching Souls, as he knew of no other service like it at the time.

NILMDTS photographers typically spend between thirty minutes to an hour in their sessions. In cramped, busy hospital rooms, they balance professionalism and intimacy while assisting grieving families. Hochberg says he will spend anywhere from 45 minutes to five hours or more on a shoot. Sometimes he will even spend several days with a family, documenting the entire experience.

“I’m doing a documentary story,” says Hochberg. “I try to provide a full narrative, considering families’ needs and wishes.”

“There’s always a quintessential moment or image for me,” he adds. “It is often the same one for the family—the image that speaks most powerfully.”

Carolyn and Brian Schroeder hold Anna as Liam, 7, reads “The Runaway Bunny” to her. Sibling James and grandparents are also present as the family says goodbye to Anna. (Photo courtesy Todd Hochberg.)
Carolyn and Brian Schroeder hold Anna as Liam, 7, reads “The Runaway Bunny” to her. Sibling James and grandparents are also present as the family says goodbye to Anna. (Photo courtesy Todd Hochberg.)

On one particular occasion several years ago, Hochberg saw such an opportunity, but he also found himself struggling with issues of propriety.

At a graveside service, Brian, the five-year-old brother of a baby who had died, asked to help move soil over the grave.

“As the shovel handle passed between hands, I dropped to my left knee in a position from which I thought I’d have the best photographic vantage point, raised my camera to my eye and focused on what was sure to be a powerful moment,” explains Hochberg.

But as Brian began to slip the spade into the soil, the boy’s mother shouted out that it was too much to witness. Hochberg, poised to trip the shutter, decided not to photograph the scene.

Weeks later they discussed the incident, with the benefit of time and hindsight. Brian’s mother told Hochberg, “That would have been a nice photograph to have.”

* * *

One thing remains almost universally true: those who have these photos taken are ultimately grateful for the decision, regardless of the circumstances under which it is made.

Tillman says the photos help with remembrance, having only physically had Berlyn with her for a few hours. She adds that the hospital photos, which have a grimmer appearance, simply do not compare to the professional ones.

“Berlyn was perfect and beautiful,” she says. “The pictures were beautiful and now I wish I had more.”

The Tillman family, photographed by Felicia Rule.
The Tillman family, photographed by Felicia Rule.

Tillman included the photos in a slideshow of her pregnancy for the memorial, a slideshow she and other family members watch regularly.

“I watch it for comfort,” she says, “because it’s all I have.”

“I have her pictures everywhere,” she adds. “When you have a baby, that’s what you normally do, and people want to see your baby, but nobody asks to see pictures if the baby died.”

Tillman will be the first to offer to show people these pictures, and they are generally well-received.

* * *

Karla Helbert and her husband had nine months with their new son Theo, slightly more time to consider ways to memorialize him.

A professional photo of Karla Helbert's son, Thelonius Luther Helbert Fueglein, made by Patricia Lyons.
A professional photo of Karla Helbert's son, Thelonius Luther Helbert Fueglein, made by Patricia Lyons.

They had photos taken by a volunteer photographer at the hospice where Theo had been cared for, but they also chose to photograph him themselves after he passed away at home from a brain tumor. Helbert, a 43-year-old therapist based in Virginia, says the photos can be excruciatingly painful to look at, but they are also a reminder that Theo is now at peace and free of suffering.

“Some people may think about taking their own child's photo after death, but feel that it would be seen by others as inappropriate or taboo,” says Helbert. “Those who do so should know that it is okay.”

Helbert now volunteers with the MISS Foundation, which supports families of newborns who have passed. She says those families overwhelmingly treasure the photographs they have of their children.

“The photos can be some of the only tangible, real ‘evidence’ that this actually happened—that their baby was born, that he or she was real,” she says.

Sometimes families stay in touch with their photographers, or reach out later to express their gratitude, and sometimes they do not. For Nord, the family’s remembrance of her presence is not important. She prefers to fade into the background during this delicate time.

*   *   *

In bereavement photography, the features and coloring of the skin are different than those of a healthy baby and the images require a post-production process which differs from that used on images of healthy children.

“People do consider it morbid when I first mention it,” notes Hochberg. “I generally say I do documentary work in the healthcare field and if they pursue it, then I say it’s around loss and grief.”

Hochberg says his job is merely to present an additional means of support, and not to interfere or force anything on families in terms of staging or posing.

“I’m there to make the humanity tangible and available,” he explains, “to later reflect on and use as touchstones.”

Despite the many tolls this volunteer work can take, Hochberg says he personally has no desire to ever stop.

“For me there’s something—as sad and tragic as these events are—affirming,” says Hochberg. “I am privileged to be a part of this very private and fragile time with these people. There are [sessions] when things are really rough emotionally, but I try to let those feelings pass through me.”

Cindy and Jeff Feinendegen prepare to bathe child Luke after his birth and death. (Photo courtesy Todd Hochberg)
Cindy and Jeff Feinendegen prepare to bathe child Luke after his birth and death. (Photo courtesy Todd Hochberg)

Wendy Williams, 30, a stay-at-home mother in Washington who lost her baby daughter Olivia in June, says NILMDTS has made a huge impact on her personal grieving process.

“On days when I miss her, I can flip through her photo book and remember the way I felt when holding her,” Williams says. “I can see the beauty in my child when I look at her tiny little feet and hands.”

“Some women choose not to have pictures taken and that's perfectly fine,” she adds. “I’m so glad I said, yes.”

* * *

Alissa Fleck is a freelance journalist whose work has been featured on the Huffington Post, TruthOut, Bitch Media, and in several national newspapers. Follow her on Twitter @AlissaFleck.

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