Babies Who Die From Terminal Illness Live On Through Photographs

By Mark Hoerrner

The famous childhood prayer begins, "Now I lay me down to sleep." The line will always invoke images of little children kneeling by their beds, talking to an unseen spirit who will hold their lives in care when they finally drift off to sleep.

The name seems a perfect moniker for a young non-profit organization that provides parents with photographs of their infants whose lives are confined to a sterile hospital environment because of complications or illness at birth. In addition to the memories of smell, touch, and even the taste on the lips from a kiss to a newborn’s head, parents can now have professional photographs made of their newborn so that a tangible reminder will remain of the precious few moments shared between parent and child.

The idea was born out of the desperation of one set of parents on the verge of losing their son, Maddux. Cheryl and her husband, Michael, had just learned that Maddux was not breathing on his own and was rushed to the NICU shortly after birth. As Cheryl had undergone a C-section, Maddux’s complications were not unusual. Babies often experience a tougher time taking their first independent breath after such a procedure.

"It was something I was prepared for," Cheryl said.

What she wasn’t prepared for were the events that unfolded over the next 12 hours. The doctor informed them that even though Maddux should have taken a breath by now, he was not improving. He was fully on life support. Though Maddux fought for his life, an obscure disease had prevented him from ever developing the neurological ability to control his breathing outside the womb. His condition could not be corrected.

Cheryl and Michael had seen a display of baby photography in the hospital by a photographer named Sandy Puc’. They called her and asked her to come to the hospital immediately.

"We knew that he was always going to be important in our life," said Cheryl, already a mother of three other children. "I knew that he was going to have a spot in my home with all my other kids and not be forgotten."

When Puc’ arrived, the parents had a simple but profound request. They wanted Puc’ to photograph their son while he was on life support and then, once he had passed, take additional shots of the mother and father holding the baby skin to skin sans wires, tubes and all of the other paraphernalia associated with medical life support.

"I arrived to find two incredibly distraught parents holding this beautiful little boy," Puc’ said. "He looked healthy; he looked like a little angel."

Puc’ took the photos, although she admits she did so through a stream of tears. Overwhelmed, she returned to her studio and developed the photographs. She then asked a friend, fellow photographer Dave Junion, to create a slideshow of the photographs.

The first time Haggard saw the slide show, she played it over and over for three hours straight.

"She came to the studio and I knew that this was going to be very emotional," Puc’ said. "I set it up and then I left the room. I could hear the slideshow being played over and over again. I could hear her and her husband crying, but I could see so much healing right at that moment because they had something she could show people. They had concrete memories of their baby."

About a week after the Haggards’ experience, another family called Puc’ for a similar shoot and not long after, the organization was formalized as a non-profit under the name "Now I Lay Me Down to Sleep," with a formal web site located at www.nowIlaymedowntosleep.org. Haggard said the organization has become, for her, an understanding of the purpose of her child’s life.

"I will never be fully healed, but I will always celebrate his birth and his being," she said. "Those photographs show the bonding between parent and child, they show the love between parent and child, the love between the parents. The photographs speak that language. The photographs are important to show friends of family without the wires and connected to every machine."

Since then, hundreds of parents of deceased newborns have heard about the program and contacted Haggard to express support.

"So many parents have called and said that they wished something like this would have been available at the time their child died," Haggard said. "Some of them have told me that they don’t even remember what their baby looked like."

Puc’ is a successful photographer and often travels the country speaking to audiences of fellow photographic professionals as well as authoring articles for trade magazines. In one issue of the Professional Photographers of America publication, she talked about her work with NILMDTS. Over the next couple of months, the organization was flooded with more than 300 requests from photographers all over the nation offering to volunteer their services to the organization.

NILMDTS produces a color brochure that explains the program and distributes the brochures to the volunteer force. Amazingly, the brochures have not cost the organization a dime, because a local printer has donated the printing services to NILMDTS. Puc’ sends out guidelines to each photographer, but also maintains www.nowIsleep.com where photographers can participate in active forums where volunteers can share tips on how to compassionately work with a family, tips on photographing the infants, and how to follow up after a shoot.

The service is offered free of charge to parents. Haggard remembered seeing a number of families in the NICU during her experience who had lost a child, and she never wanted cost to be a factor in securing photographs of their baby.

"Most of these parents have nurseries in place and have all these plans and think they are having a baby and are blindsided by this event," Puc’ said. "They usually have less than 12 hours to make any kind of decision. They deserve these kinds of memories and we didn’t want to put undue pressure on the families by subjecting them to a financial decision."

Haggard said having the photographs has not only helped her and her husband deal with their grief, but also helped them to share Maddux with friends and family.

"I don’t want someone to look at a photograph of my son and have someone say ‘that’s so sad,’" she said. "I want them to say, ‘oh, what a beautiful baby!’ I wanted them to see him for the blessing he was and still is to us. Even though he may never have taken a breath, he will always be our little angel."