Grieving Parents of Stillborns Find Healing on Facebook and YouTube

Nov. 26, 2013— -- Hope Lienau was in her 36th week of pregnancy when things began to go wrong. She learned her son was in a breech position and after three attempts, doctors successfully moved him into a head-down position.

"It was exhausting and I was very anxious," said the Simpsonville, S.C., mother. "That night, I was in the kitchen with my husband and literally felt my child clawing at me in my cervic area."

But the next day, she felt none of the usual kicking, despite "poking and jiggling" her pregnant belly to get a response.

It was a mother's intuition that sent her to the hospital where nurses couldn't get a heartbeat, and during an ultrasound, there was no blood flow.

"I think I went into shock," said Lienau. "A close friend had a still birth and I knew she had to deliver him. I broke down and said, 'Oh God, please not me.'"

On Nov. 11, 2005, she labored all night long to deliver a 6-pound, 8-ounce stillborn.

Pennsylvania law gives birth certificates to stillborns.

"He was perfect," said Lienau, now 40. "The only thing wrong was that he had the cord wrapped around his neck twice. I know what killed him, the tightening of the cord, but the turning contributed to it."

The child was named Collin Chamberlain, after Lienau's father. The nurses took pictures of the fully formed boy, whose face was badly bruised because of the quick birth.

"I treasure all 36 pictures, but they are never enough," said Lienau, who, now eight years later, has posted an album of her son on Facebook.

She is not alone. With attitudes slowly changing, couples are encouraged to memorialize their stillborns -- and in today's world, that means on social media.

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A stillborn is defined as a baby who dies after 20 weeks in utero and happens in about 1 in 160 pregnancies, according to the March of Dimes.

"There is a huge culture who wants to put it under the carpet and not talk about it," said Lienau, who is a bereavement counselor in the the NICU Family Support program sponsored by the March of Dimes.

"I don't show everyone his picture and some people react [negatively], but I am proud to be his mom and proud of him every day," she said.

In 2011, Jeremy and Carey Bear of Long Beach, Calif., posted a YouTube video of the loss of their triplets -- Rudyard, Desmond and Oscar. The couple had been chronicling the pregnancy online and when Carey's water broke at 22 weeks and they knew the babies likely would not survive, a reader urged them to take photos.

"I just wanted it to stop," Jeremy Bear, who ended up taking more than 100 photos, told the Daily Beast, which first reported the story. "I just wanted to be past that moment."

Bear told ABCNews.com that the decision to put images of his children online was not an easy one. "Even now, sometimes we go back and forth -- was it the best thing to do?"

But he said most people were "extremely sensitive and supportive" of their decision. "We didn't just get encouragement from people, but here and there even advice. As funny as that sounds, the things people talked about to cope helped us a great deal."

"Parents of stillborn children often feel alone in our grief," he said.

Some may view the photos of the black and blue-tinged infants as ghoulish, but mounting research on grief says keeping mementoes of these stillborn babies recognizes their existence and provides healing comfort to heartbroken parents.

"The [Bear] video is touching to me," said Lienau. "The reality is we don't talk enough about the death of a stillborn. Death is not something we like to talk about in this nation. But we are breaking the silence."

Finding photos of dead children "distasteful and morbid," was not always the case, according to Joanne Cacciatore, assistant professor of research in trauma and grief at Arizona State University.

She founded the Miss Foundation, a nonprofit that helps families whose child has died from any cause.

Postmortem photography, also called "memento mori" or in Latin, "remember thy death," was widely accepted in the United States during the 19th century when children of all ages died more frequently than today. It is now re-appearing in prenatal protocol, according to a 2012 study co-authored by Cacciatore, which appeared in the Journal of Loss and Trauma.

"Families would save for years and years to get a family photo, a Daguerreotype -- it was a big deal," she said. "When a family member died, and it was usually children, they would borrow from people to capture the shot."

In one, a 12-year-old girl is sitting upright held by a broomstick behind her back, according to Cacciatore. "They painted her eyes open and you can see the rigor mortis on her finger tips."

The photo of a stillborn now serves the same purpose, she said. "If you don't take the picture, there is no opportunity to go back and retake it, because the baby is dead."

The movement grew out of the work of Dr. Elizabeth Kubler Ross at the University of Chicago, who in the 1980s coined the now widely accepted five stages of grief. "She said we have to talk about death in honest way," said Cacciatore.

Today, hospitals encourage parents to embrace a stillborn's body and even offer photography services and the opportunity to make mementos such as plaster molds of footprints.

One organization, Now I Lay Me Down to Sleep, trains, educates and mobilizes professional quality photographers to provide "beautiful heirloom portraits" to parents who experience the death of an infant.

About half of all infant deaths are stillborns -- about 25,000 babies a year in the United States and 3 million around the world, according to Cacciatore.

"Birth by itself is traumatic enough when the outcome is good," Cacciatore said. "But put a dead baby in a woman's arms."

She said she lost her fourth daughter, who died just 15 minutes before her stillbirth in 1994.

"I was in the hospital in active labor and they lost the heartbeat," said Cacciatore. "They talked about a crash cesarean, but I was able to push her out fast enough. They didn't try to resuscitate her because they thought she would be brain damaged and didn't want litigation."

"It was quiet and I had three other children and knew that was not the way the delivery room sounds," she said. "My eyes were shut tight and I was shaking uncontrollably. I could hear my husband crying, 'Oh my god, she is so beautiful. ... It was somewhat like a horror movie."

Cacciatore held the baby, named Cheyenne, for two hours before nurses pried her away to take the body to the morgue.

The loss was "life-altering," said Cacciatore, who dropped to 90 pounds in grief. She drove back home with a car seat in the back and to a fully decorated nursery. No one bothered to tell her breast milk would begin to flow, despite the death.

"This child lived. This child died. This child matters," said Cacciatore. "It's really sad to put people in a position where they have to defend the worthiness of the child they loved."

Lienau said she is glad that the Greenville, S.C., hospital nurses encouraged her to document Collin's death, at first, she was horrified when they suggested she bathe him.

"You want me to put a diaper on my dead baby?" she asked.

Her husband bathed Collin, then nurses took his footprints and urged Lienau to hold her baby.

Lienau said she "didn't realize at the time," but she was bonding with her baby, "creating a memory with him."

Today, she has two children, aged 3 and 5, and helps other mothers who have similarly had stillborns. "They say, 'Don't give me a nurse. I need to know that this dark, cutting, stabbing pain in my heart is going to get a little better.' They feel like they will feel like this for the their rest of their lives."

"I needed to be there for other families," said Lienau. "Their number one question is, 'Did you go on to have another baby?'"

This is the first story in a series about stillborn babies: How families deal with their grief, how friends can help and what medical science knows about why these babies die.