These are the worst moments of Beth and Dan’s life.
In a quiet room, baby Emily lies on Beth’s chest, while she brushes her newborn’s hair left to right over her forehead. Dan, Emily’s father, sits nearby in a recliner, eyes closed, head tilted back, sighing big sighs out of his barrel chest.
“Do you need anything, babe?” he says every now and then.
“No,” Beth tells him, still petting Emily. She looks up with worn, smiling eyes. She has Emily, and that’s enough for now.
Emily had been an active baby. She moved when Beth moved and would kick or spin away when nurses took sonograms of her. Emily had a cyst in her chest taking up room where her heart and lungs should have grown. Twenty weeks into the pregnancy, doctors told Beth and Dan the condition might require surgery in her first year of life, but afterward there was a good chance she’d be a normal little girl.
A day before Beth’s 30-week appointment, the baby stopped moving and Beth went in for an emergency scan. The cyst had grown too large; it had crowded out Emily’s heart, and now it had stopped beating.
A nurse telephoned Shane Epping.
“We might have a situation for you this evening,” she told him. “Can you be there?”
Epping can always be there. In the past three years he has seen more than 50 demises, as they are called — newborns who come into the world and swiftly leave it. He lost his own daughter this way in 2012.
He’s a professional photographer in Columbia, Mo., and a volunteer with Now I Lay Me Down To Sleep, a nonprofit that matches grieving parents with photographers who take pictures pro bono of their deceased babies.
He enters hospital rooms with a soft knock and a knapsack full of camera gear, and he photographs the infinite moments that come after a newborn’s fleeting life.
Emily was born — and died — on Oct. 28, 2015, just before 7:30 p.m. Epping arrived at the hospital after 8:30 p.m.
“They came in expecting some abnormalities, but nothing like this,” a nurse had told him. The baby looks good, considering, she tells him, then points to a room. “Around the corner. First door on the left. They’re doing pretty well.”
Epping knocks on the door, and Dan lurches out of his chair.
Dan is a large man with shocks of brown hair that peak at the forehead from the many times he has run his hands through his locks. Beth looks up and gently moves her daughter from her right arm to her left. She has hospital ID bracelets on her wrists.
Baby Emily is swaddled in a gray and peach blanket that Beth’s mother made. She looks a little red: Her cheeks especially are rosy, her eyes are closed and her lips are dark and slightly pursed.
Beth and Dan — to preserve their privacy, they asked to be identified in this story by only their first names — weren’t sure about having photos done. Visuals can be harsh reminders. They are moments unavoidable, recollections of tears and prayers and “Why us?” But photos are all Beth and Dan can take home from the hospital.
“We were mainly just looking for some pictures of her,” Beth tells Epping. “Maybe one of us as a family.”
“We can do that,” Epping says, draping a camera strap around his neck and under his long black hair. He’s not tall but not slight, and he angles his frame into seemingly uncomfortable positions because that’s what photographers do, he says.
“Mom,” he says to Beth, “if you feel comfortable, maybe give her a kiss on the side of the head.” She obliges.
“Dad, if you could get down on a knee, if that’s comfortable.” Dan does.
“She looks pretty good,” Epping says as he gets ready to shoot. “Okay, baby.”
Epping and his wife, Mary, learned something was wrong with their baby at 20 weeks.
“Things aren’t looking exactly like they should,” the doctor had told them after they’d come in for a regular sonogram, and she handed them an address for Mark Grant, a high-risk-pregnancy specialist in Columbia. “Go see him now. Right now.”
Grant performed another ultrasound. The baby had one clubfoot, the test revealed, and was a little small. Still, Grant was optimistic. Epping asked for approximate odds that his baby would be healthy.
“Eighty-20, the baby is okay,” Grant told him.
Two weeks later, more-subtle physical abnormalities were appearing in the baby, a girl they had named Faye. Grant issued new odds : 50/50.
He drew amniotic fluid to test Faye’s DNA. She carried trisomy 18, a fatal complication in cell division that stunts a fetus’s development. It occurs in 1 of every 2,500 U.S. pregnancies; most babies with the condition are stillborn or die within their first year of life.
Grant called Mary with the news a couple of days later. Mary called her husband at work.
“Yeah,” he said. “I figured.”
Mary carried Faye to full term. They didn’t tell anyone outside their family about Faye’s prognosis. She didn’t have other complications. The ultrasounds looked good, aside from the clubfoot. (Other trisomy-18 abnormalities include a cleft palate and wide spaces between the eyes.)
As parents, their expectations changed. They tried to bond with Faye in utero once they learned her diagnosis. Mary talked to her day and night. Shane put ear buds in his iPod and laid them on Mary’s belly so Faye could listen to music. At their 40-week checkup, things looked good. Doctors were going to induce labor three days later, a Thursday. One last ultrasound showed all clear.
Epping wrote Faye a letter — he posted it on Facebook along with a photo of him bent down near Mary’s baby bump — his first communication with his daughter.
“I want you to know that I’m ready for you to be my daughter,” he wrote.
“The doctors say that you won’t make it because you have a disease called Trisomy 18. This is no fault of your own. . . . You’ll be surrounded by your mom and me. We’ll be there every second. We will never leave you alone. I want you to do what you have to do to find peace. I think you might be the only one who knows what that is. Before you’re even born, you’ll have to carry a wisdom that’s beyond me or anyone else in the room. I wish it were easier. I’m a strong person and I’ll help you, but I want you to help yourself, too. If you need to let go, that’s ok. You will not be forgotten. You will not be forgotten. You will not be forgotten.
“I’ll see you tomorrow. I love you. Dad.”
Two days later, Grant could no longer detect a heartbeat. He pronounced the baby dead.
A day after that, Faye Epping was born.
A nurse summoned a photographer for Now I Lay Me Down To Sleep from Jefferson City, some 30 miles away. She arrived before midnight, wearing flip-flops and jeans, carrying a camera bag.
“She looks so good,” she said with a smile, entering the room. “What’s her name? She’s beautiful.”
For the last shots, Epping took off his shirt and held Faye to his chest, skin to skin. The photograph, printed on an 8-by-10-inch canvas, sits on his dresser today.
Months later, Epping signed on to volunteer with Now I Lay Me Down To Sleep, to help others find the same healing he had.
Now he walks into hospital rooms, sometimes the same room where Faye was delivered, offering similar lines, rendering gentle smiles, suggesting poses, opening window shades to flood the room with light.
Most shoots include parents and the baby, maybe some grandparents, too. There’s an incredible stillness to adults holding a newborn’s corpse, sometimes rocking them or softly bouncing them up and down. Tears fall silently. Most families have already had a few hours to grieve by themselves.
Sometimes parents don’t say a word. They don’t look up at Epping, don’t lurch out of their chairs to shake hands and say, “Hello,” and “Thank you for coming down here.” They are scared and bewildered and overwhelmed. Those sessions are the shortest, a half-hour at most.
Sometimes Epping will stay in the room for hours, capturing a thousand frames.
And then there are the sessions with siblings. An older daughter, 10 years old, is all he remembers from one session. She is crying and holding her deceased baby sister; crying and watching her mother hold the baby; crying and posing with her sister and parents.
That’s how photographs can help, he reasons. Some day, siblings will look back at the images and hopefully make sense of them. They’ll place themselves in the situations once more: back in the hospital room getting their first glimpse of being a big sister or brother. Parents can remember their child again. They’ll have proof of a day so sad and surreal.
For the final photographs of baby Emily, Dan swaddles her in the gray and peach blanket and sets her in a hospital crib. Epping plucks two roses from an arrangement that family members had sent to the room. He places them by her side, then snaps a quick two dozen photos in a blast of pops.
“The photos come in black and white,” he says as Dan scoops up Emily and hands her back to Beth. “They’ll be hard to look at.”
“We’re glad to have them,” Dan says.
“I’m happy I have mine,” Epping replies, breaking his cardinal rule. He does not generally tell parents about Faye, or Mary. This moment is not about him. Or Faye.
“Oh,” Dan says. He and Beth look at each other.
Epping loves Faye. He’s proud of Faye. He does not like to talk about Faye. It rehashes the pain and waiting and uncertainty. When he wants to think about her, he’ll look at a photo. He made a video about her demise and posted it online for those moments and for the moments when people ask about her. He sends them a link to answer their questions.
“It’s all right there,” he says.
Now, before he leaves Beth and Dan, he rummages into his camera bag and pulls out a pen and a form.
“I’ll need a place to send these pictures,” he says, and because Beth is technically the patient, privacy laws mandate that she fill out the paperwork. She hands Emily to Dan and grasps for a pen.
“What’s today’s date?” she asks.