Now I Lay Me Down to Sleep

    When Heather Hamilton’s doctor put her on bed rest toward the end of her second pregnancy, she and her husband Scott were concerned but not unduly alarmed. After all, Heather was sailing through this pregnancy as she had her first, which produced happy and healthy Henry, now a 3-year-old eagerly awaiting the birth of his little brother.

    When Samuel was born six weeks premature on Aug. 15, 2007 at Banner Desert Hospital in Mesa, he was taken to the neonatal intensive care unit for observation. After five days of tests, Samuel was released to go home with his parents. But more problems arose. Samuel wouldn’t eat and began to lose weight at an alarming rate. Within a few days he was back in the hospital and an odyssey the Hamilton family could never have imagined had begun.

    Samuel was moved to Banner’s pediatric intensive care unit, where he was subjected to a battery of new tests, one of which showed a serious blood infection. He needed a feeding machine and by early September was put on oxygen. Exploratory surgery at last revealed the source of Samuel’s struggles: a stricture, or blockage, of the intestine. Doctors finally knew the cause of this tiny fighter’s condition, but his body had all but given up. The final blow necessitated unimaginably difficult decisions for Heather and Scott. An MRI showed permanent brain damage as Samuel fell victim to one of the most virulent forms of meningitis.

    Samuel was moved to Hospice of the Valley’s Gardiner Home, a location specializing in pediatric patient hospice care. In this atmosphere of calm and caring, Samuel’s family was able to be with him in ways that weren’t possible at the hospital. Gone were the tubes and wires, the drugs and bandages that, while meant to sustain Samuel’s fragile life, turned him into an untouchable and isolated patient kept at bay from the family that yearned to hold and love him. Going to such a place, says Heather, “gave us the chance we needed to be with Samuel.”

    How does a mother let go of the child she has nurtured deep inside her womb? The weeks at the hospital became a blur of comings and goings, crossed fingers and copious tears. Nothing had prepared the Hamiltons for this calamity. How could they possibly find any measure of solace, let alone beauty, in the endless and fearful hours that had passed since that August day?

    In February 2005, a mother in Evergreen, Colo. was grappling with the same anguished questions. Faced with having to take 6-day-old Maddux off of life support, Cheryl Haggard and her husband Mike remembered how taken they were with the photographs of babies that adorned the halls of the hospital. With both parents sensing Maddux’s waning chances, Mike wrote down the name of one of the photographers and called her studio. Sandy Puc’ cleared her schedule and came straight to the hospital. There was precious little time left for Maddux. In a private moment, his life support was removed. Then Sandy was called in. She proceeded to take beautiful photos of mother and baby, skin to skin.

    “We have so many images of our children (a 14-year old son and two daughters, 11 and 7) throughout the house,” says Cheryl. “Maddux needed a space on the wall.”

    Though they lost Maddux, the Haggard family had lasting memories through the keepsake photos. Cheryl and Sandy were profoundly moved by the experience and decided to join forces to help others in similar situations. With poignant irony, the Now I Lay Me Down to Sleep (NILMDTS) Foundation was born.

    The foundation oversees a network of more than 3,000 volunteer professional photographers in the U.S. and eight foreign countries who donate their time and talents at no cost to families of babies who are stillborn or at risk of dying as newborns. The photographers conduct private portrait sessions at the hospital or hospice and present families with a DVD or CD of beautiful, professionally retouched pictures to cherish as they deal with their grief.

    The foundation’s purpose is to help parents who are experiencing early infant loss and to guide them through an important process at a time when the concept of photographing their baby, let alone considering the costs involved, may be the furthest thing from their troubled minds. The foundation’s mission is to be “there for parents and families to help aid them in their healing, bring hope to their future and honor to their child. It is through remembrance that a family can truly begin to heal,” according to its website).

    Some families may find this concept — professional-quality photographs of dead or dying babies — objectionable. It is unquestionably another difficult decision required by families that are already experiencing an extremely stressful situation. But “you can’t get that day back,” Cheryl emphasizes. “And a digital camera just isn’t enough. I don’t want my children to be afraid of death, but I also don’t want them to be afraid of life. The images of Maddux in our home show that. He was real. He was here.”

    A hospice worker approached Heather with information about NILMDTS as changes in Samuel’s condition indicated he was nearing the end of his life. Heather was receptive to the idea, realizing what treasure lay in a collection showing that “Samuel was important and that his life mattered.” All Heather had were pictures from the hospital. She knew that photos taken in the peaceful atmosphere of hospice would show Samuel in a warmer, more comforting light.

    Heather found the process of taking the pictures to be therapeutic. Samuel looked so beautiful. The photographer was kind and gentle as he captured Samuel in life, surrounded by his loving family. This was actually the photographer’s first time shooting for NILMDTS—and Heather was pleased with the results. Without the tangibility of the photos, says Heather, “it’s hard to heal. Without them, how do you validate everything you’ve gone through? Where’s the proof of what changed you into the person you are now? This service says ‘you have to deal with this. It’s okay to deal with it. It happens.’”

    Photographer Jenny Schomaker of Gilbert first heard about NILMDTS in September of 2005 and thought it was a wonderful concept. Little did she know how soon she personally would get involved. That December, Jenny’s very close friend, Venessa Whitner, lost her newborn daughter Blaise. Remembering NILMDTS, she called her friend to offer her services.

    “I was so nervous because I didn’t know how it would be received,” Jenny recalls. “My heart just ached for my friend. She was so touched. It was such a tender moment that I will cherish. Her daughter was so beautiful. You could feel a sweet spirit in the room. She has since told me what a healing gift that was and how she will be forever grateful for my phone call and talent.”

    That was all it took for Jenny to join NILMDTS. She tries to do two to three sessions a year. But she is encouraged by the organization’s growth and the availability of more photographers to share assignments, which she admits are “very draining but very rewarding—a very emotional, powerful and healing experience for everyone involved.”

    NILMDTS provides photographers with a training manual and its website offers a password-accessible forum that describes multiple scenarios photographers might confront in the process of shooting. A committee reviews each photographer’s credentials and seminars are offered in several cities around the country.

    The Hamilton family is one of thousands that have been served by NILMDTS since 2005. As her family works through the grief of losing Samuel, who died on Sept. 27, 2007, Heather feels compelled to participate and give back in some way. She has offered her time to nurses at the hospital, sharing her experience and encouraging them to inform other families who could benefit from such services.

    Heather is troubled by the way infant death is such a hush-hush, almost taboo, subject.

    “I know it isn’t a popular subject, but I do feel strongly that it is an important one,” she says. People mean well, but she has been hurt by statements like “at least he wasn’t here long” or “you’re lucky you still have Henry.”

    “It’s a weird idea in society that it’s ‘just’ a baby,” she says. The gift of Samuel’s presence, even so briefly, “is still very much a part of our lives.”

    Heather covets her 99 photos of Samuel and notes, “You have something to stare at…cry over…share…something to substantiate the experience. So many families are left with nothing.”