When most of us think of framing our family photographs, we're debating wood or crystal, silver or gold. But the photographs of some local families are framed first by the loving arms of grieving parents whose newborn babies died too soon, surviving only hours, days, or weeks into their fragile lives.
Professional portrait photographer Heather Donlan of Naples documents the family's fleeting time together at the parents' request. She is one of about 7,000 volunteers working with Now I Lay Me Down to Sleep, a suburban Denver nonprofit organization created to memorialize babies whose lifetimes are measured in moments.
Donlan says she discovered the group's website while living in Colorado and signed up as a volunteer photographer after moving to Naples in 2006.
"I had had a second trimester miscarriage,î she says, ìand even though my grief was not nearly as severe as that endured by the families I photograph, I knew I could go into the hospital room and lend a gentle voice and be a calming energy for the parents."
Expectant parents usually hear about the free service from the nurses at the Birth Place at Naples Community Hospital and decide on their own whether they want photos.
At no cost, Donlan provides each family with a CD full of images she has taken of the baby and parents. If the family has no computer, she'll print the images and present the family with a photo memory book.
"We're providing heirlooms for the family so that this little soul on Earth is documented and remembered as a loved human being," Donlan explains.
When she gets the call, Donlan rushes from her two-story portrait photography studio near Crayton Cove to the Birth Place at NCH.
"We're working with borrowed time," she says. "We rarely get 24 hours notice. Sometimes, it's only an hour or two. Once I'm in my car, I try to think good thoughts for the family. I'm not a very religious person, but I'm very spiritual, so I ask that I'll be able to do my best for the family. Afterward, they tell me they look back on the photos as healing because they honor the spirit of their little baby."
"In March of 2007, several of us attended a bereavement conference in Miami to teach us how to better take care of our patients," explains Dyan Fleishman, registered nurse at The Birth Place at NCH, who helped bring the program here.
"We were so excited when we saw the presentation given by Now I Lay Me Down to Sleep. We were struck by how beautiful the photographs were, and how much better they were than what we were able to take ourselves. As soon as we got back to Naples, we got involved.
"We tried to do our best, but we aren't professional photographers, and our cameras have limitations. We used to use a Polaroid. Heather shoots in black and white because many of these babies have poor color, and she doesn't want that to dominate the photo. She has a much better camera and also lighting equipment so these intimate family portraits really are beautiful."
"Twenty-five or 30 years ago, people didn't talk about losing their babies. Nurses were told that it was best to tell the families to get over it and concentrate on their next possible pregnancy. That turned out to be hurtful for the families, because the babies they had lost did exist, and they mattered."
The organization has become well known enough to have its own website: www.nowilaymedowntosleep.org
Donlan's first Now I Lay Me Down to Sleep call came while Tropical Storm Fay was threatening Florida's Gulf Coast on Aug. 18, 2008. First-time parents Leah and Ryan Paige of Naples had just given birth to their son, Christian, at the Birth Place.
ìHeather was there. She had never met us before, but she was so committed in the love she feels for the babies,î Leah recalls. Christian had problems and was transferred to the Neonatal Intensive Care Unit (NICU) immediately after his birth, so Donlan was able to take only a few photos the night baby Christian greeted the world, returning a few days later.
His heart defect was claiming him, breath by breath, caused by Trisomy 18, a chromosomal abnormality affecting one in 5,000 newborns. According to the March of Dimes, babies with Trisomy 18, also called Edwards Syndrome, have multiple birth defects and seldom reach their first birthdays. Prenatal testing had revealed the defect in Christian, but his parents had decided to continue the pregnancy after trying to start a family for years.
When they got the Trisomy 18 diagnosis, Ryan Paige recalls, "I said, 'It's not up to us. Life and death is God's decision.' We said, 'God, we trust your plans for him. Just let us meet him."
During baby Christian's last night, the couple had 'kangaroo care,' with the baby lying skin-to-skin on top of each parent's chest, taking turns, their heartbeats speaking to each other.
"I didn't get enough shifts," laments Ryan Paige, three years later.
While their full-time attention was devoted to their son, nurses at the Birth Place were making a memory box for baby Christian.
"We waited quite a while after he passed before we opened it," Leah Paige recalls. "We could still smell him. They had put in all sorts of little treasures ... a lock of his hair, some of his clothing, his wristband, his tiny booties, and imprints of his footprints and handprints on quilting fabric. It's such a gift to us to know that they remember our baby, too."
The Birth Place holds an annual ceremony of remembrance, reading names and lighting candles to memorialize the babies who have died there. This year, the ceremony was on Oct. 14.
Christian's parents describe him as having his dad's face and eyes, and his mom's nose.
"That last night, he fought so hard to stay with us," recalls Leah Paige. "We held him for about eight hours as he struggled to breathe. We kept telling him that we would see him again."
"By the end," she says, "we were begging God to take him because it was so hard to watch."
"We could have intervened," explains Ryan Paige, a North Naples firefighter who has witnessed his share of death among all ages, "but that would have been for us. Not for him."
Both parents saw a visible change in Christian's face just before he died.
"The moment before he passed away, he opened his eyes, and they were clear. His eyes spoke volumes," says Leah Paige. "There was such clarity there. Then he shut his eyes, and he was gone. It was so hard to hold him and just wish he had more time."
Donlan, after spending time with them over those few days in the hospital, has become a permanent part of their family.
In their bedroom hangs the portrait Donlan created: mommy, daddy, baby, memorializing the few hours Leah, Ryan, and Christian were together.
"We have the biggest smiles on our faces," Leah says. "It is the family we were always supposed to have.
"And now, when people ask me," adds Leah Paige. "I always say: 'I have a son."
Trisomy 18 also was the diagnosis that shortened the life of baby Lilli, born to parents Wendy and Cliff Woodruff, who operate an Immokalee ranch with four children from their blended families.
Like the Paiges, the Woodruffs were told of their daughter's diagnosis at the midpoint of their pregnancy. However, recalls Wendy Woodruff, "termination was not an option for us. However it was going to be, I was going to hold an umbrella of prayer over my situation, and just ride it out."
Born six weeks early at the Birth Place on June 3, 2010, weighing just less than 3 pounds. Baby Lilli was rushed to the NICU, where tests confirmed that she had a hole in her heart.
"Heather came in at the very beginning," Wendy Woodruff recalls. "I could not have asked for a better photographer to fulfill my vision of the most intimate family portrait we'd ever have. I'm forever grateful to her."
Wendy Woodruff loves how Lilli looked just like her daddy, with blue eyes, a button nose, rosebud lips, a little dusting of dark hair, and no outward signs revealing how broken her body was inside.
"I would hold her and look at this perfect angel of a girl and think that maybe they were wrong when they told us she was terminal. I would think they must have made some kind of mistake."
That portrait now hangs in the couple's family room, a forever reminder of the baby whose sister, Kayla, 17, eulogized as "everyone's little Lilli-bug, who was an absolute warrior."
Lilli had doctors, nurses, and hospice staff scratching their heads, says Wendy Woodruff, because she vaulted over one barrier after another. First, she graduated from an incubator to a regular crib. Then, she began to need less oxygen through her tiny nasal tube.
After 12 weeks in the hospital, Lilli had gained three pounds and earned her nickname of "Chunky Monkey."
"At that point," says Wendy Woodruff, "I needed to get away from the sirens and bells and people saying 'Don't expect this or that.' I wanted to be home with all five children under one roof, and to just love this baby."
At home for the first time, Lilli needed no medications or breathing monitor, but still required supplemental oxygen and a feeding tube that brought milk directly into her stomach. AVOW Hospice was called in to provide for Lilli's medical needs, and the family felt free to simply enjoy having Lilli home with them.
"Her daddy is a cattleman, so he took her out into the pasture to meet all the horses, pulling her oxygen tank behind him," Wendy Woodruff recalls.
But eventually, after the Woodruffs began wondering if their baby could possibly see her first birthday, Lilli became ill.
"We began to battle," Wendy Woodruff recalls. "The doctors had always told us that infection was the most dangerous thing for Lilli because her immune system was so weak. Once the sniffles started, Lilli developed a little cough. Within three days, it had developed into a respiratory virus."
At the recommendation of their pediatrician, the Woodruffs drove to Southwest Florida Children's Hospital in Fort Myers, where Lilli was admitted and "hooked up to all those machines again," recalls Wendy Woodruff.
Although she initially recovered from the virus, toward the end of her three weeks there, Lilli began to falter. The Woodruffs took their other four children to the nearby Ronald McDonald House and returned to the hospital that night.
"I knew something was happening," remembers Wendy Woodruff. "From fighting off the virus, something had gone wrong in her heart. Her blood was no longer being oxygenated before going through her body. She was drowning in her own blood.
"We knew. We just knew this was it."
Wendy Woodruff remembers that night like it was moments ago. The rest of the unit was dark, and the curtains were drawn so that Lilli's room shone like a lighted candle at midnight.
Her doctor came in to explain what was happening in a calm and soothing voice. The nurses nudged a bare foot from her tiny jammies to make molds of Lilli's footprints, for the quilt-fabric imprint that is part of Now I Lay Me Down to Sleep. The children came back into the room. Medication was keeping Lilli comfortable.
"She was in our arms for the whole nine hours of labored breathing," Wendy Woodruff remembers. "At that point, we accepted that there was no turning back. I began to ask God to take her so she could rest. I was praying the rosary, and when I made the Sign of the Cross at the end, Lilli took her last breath. She looked so pure and glowing. It was utterly divine."
"And my husband looked at me and asked, 'Is that what Jesus looks like?'"