Jill and Mike MacGregor like to smile.
The Ohio couple smile as they slide the vase of yellow silk flowers to the far side of their dining room table and wait for me to set up my laptop. They smile as they begin their story — about the perfect early days of Jill's second pregnancy, then the complications beginning in her fifth month: the emergency surgery after her appendix burst, the bleeding and contractions a few days later, the weeks of bed rest, and finally, the difficult cesarean section birth of their son, Collin. Then came even harder weeks as the baby suffered one life-threatening problem after another. He was transferred to the Cleveland Clinic's Neonatal Intensive Care Unit, which treats very sick babies from around the region. Collin had the unwelcome distinction of being the very sickest.
He had seizures on New Year's Eve, Jill says, her smile widening. Then she flushes and cries and asks Mike to continue the story, and I understand their smiles as courage and willed optimism. The final life-saving intervention failed, and the MacGregors had to make the agonizing decision to remove life support.
Collin died in January of this year, 54 days after his birth.
Several weeks earlier, they met another mother in the NICU who lost her baby. She told them that if the worst happened, one of the nurses would ask if they wanted a photographer. Say yes, she instructed, even if you think it's bizarre. "I thought it was bizarre," Jill says. "But when the nurse came and mentioned the photographer's name, I perked up and said, 'Linda Ford of Linda's Lenses?'"
Four years earlier, Ford had printed the MacGregors' wedding photographs and made them an album after their wedding photographer bailed. She knew them in their days of joy; now, she became intimate with their greatest sorrow. Collin's room was full of grieving family members, but Ford quietly instructed the couple how to pose with Collin. Then she positioned him in a series of poses similar to those of the healthy babies she photographs in her daily business.
Ford is one of the 7,000 professional photographers in 25 countries who volunteer their time to Now I Lay Me Down to Sleep, a Colorado-based nonprofit founded in 2005 by Cheryl Haggard and Sandra Puc', a mother and photographer who met under similar circumstances. The exact number of sessions conducted by NILMDTS photographers hasn't been calculated, but a fraction of the sessions — 4,000 — have been logged on its website.
NILMDTS photographers are on call to provide photo sessions for babies at or beyond the gestational age of 25 weeks, either stillborn — some 25,000 annually in the United States, according to the Centers for Disease Control — or babies who die shortly after birth.
Back at their computers, the photographers edit away the bruises, sloughed skin and other evidence of physical trauma, then create a CD of beautiful black-and-white images that the family can later have printed at a studio of their choosing. It's a gift, which some photographers augment with other offerings: printed photos, small photo booklets, DVDs with music playing over images of the baby.
The MacGregors' two-and-a-half-year-old son Ian often asks if he can watch Collin's DVD. They plan to get some of the portraits of Collin printed, which they'll frame and hang on the living room wall next to portraits of Ian.
"I want Collin to be known," Jill says. "If we're lucky enough to have another child, I want him or her to know there were two brothers."
Reaction to NILMDTS's work cleaves to two opposite poles. Some people think it's wonderful; others find it morbid.
Brenda Beard, a labor and delivery nurse at Yale-New Haven Hospital, thinks the latter group has not experienced infant death. "It's a club no one wants to belong to," she says, "but the families I've worked with over the years cherish these mementos."
Long before she heard of NILMDTS, Beard and her colleagues realized that these families needed to take more than empty arms home from the hospital. The nurses snapped Polaroids of the babies and offered them to the parents, promising those who recoiled that they would keep the photos in case they ever changed their mind. Most came back; one couple even returned after seven years to claim the photos.
A few years ago, a mother came in who knew her baby would be stillborn and had already contacted NILMDTS. Since then, Beard and local photographer Jim Oca have worked with many parents during this most terrible of moments.
All of this — even the nurses with their Polaroids, now plying them in many hospitals — reverses the approach to newborn death common a half-century ago. Back then, doctors and nurses whisked the dead baby from sight. Mothers never got a chance to hold their babies — which weren't even regarded as human — and were discouraged from naming them or holding any sort of service to mark their passage.
"The attitude was 'pull yourself up by your bootstraps and get over it,'" says Jay Ruby, a retired Temple University anthropologist who wrote Secure the Shadow: Death and Photography in America. "We as a society were denied the opportunity to grieve, because we thought grief was pathological. But our attitude to bereavement has changed thanks to the work of Elizabeth Kubler-Ross and others."
The NILMDTS photographs hearken to the Victorian era, when postmortem photography was common. Ruby points out that in those days, both birth and preparations for burial took place in the home (morticians came up with the name "funeral parlor" to remind customers of their living rooms, where the deceased were traditionally viewed before burial). Even before photography, the concept of the death mask, a casting of the face of a public official or loved one made just after they died, dated back millennia.
Then birth and death moved out of the home and into professional settings, and then Kodak turned photography into a sport for amateurs. Individuals may have taken photos of the dead in private, but few professional photographers were summoned.
But amateur snapshots don't carry the same psychic weight.
"For professional photographers to do that kind of quality work is a huge gift to the parents," says Linda Layne, a professor of humanities, social sciences and anthropology at Rensselaer Polytechnic Institute.
"We take photos of each other all the time, even with our phones. But when you have lights and do a sitting with a professional that is a clear cultural marker of kinship. It expresses that this child is a valued member of the family."
That was what Haggard had in mind when she co-founded NILMDTS. The photos Puc' took of her son Maddox, who died after six days of life support, bring her comfort. And because Puc' was able to digitally erase the trauma of his short life, Haggard can share his image with others.
"I don't want pity when I show his picture to people," she says. "I want them to say, 'Wow, he was beautiful.'"