Online support for parents after pregnancy losses
MIAMI—Kristin Cook was 26 weeks pregnant last May when doctors delivered devastating news. Her baby, a little girl already named Stevie Joy, no longer had a heartbeat.
The next few days were a blur. She was admitted to the hospital, gave birth and planned her baby's funeral. Feelings of isolation set in. This wasn't supposed to happen to someone like her -- a 24-year-old, healthy woman who was having a problem-free pregnancy until everything went wrong.
But Cook quickly found she wasn't alone. Some online research revealed that 1 in every 160 pregnancies ends in stillbirth, or fetal death after 20 weeks of pregnancy. About 15 to 20 percent of known pregnancies end in miscarriage, with rates higher among women who don't yet realize they are pregnant, according to the Mayo Clinic.
Cook began pouring out her feelings in the "happy little blog" she had created early in her pregnancy as a way to keep her mom updated. Her blog, called "Letters to Stevie," soon linked Cook to others who had joined a group none of them wanted to be part of: the baby-loss community.
"Sometimes I feel like I've recently mastered a whole new language. No, not Chinese. No, not Spanish. No. The language I now consider myself fluent in is the language of Baby Loss," she wrote in the blog on July 29, 2010.
"I kept blogging for myself because it made me feel good," Cook recalled in an interview. "I didn't think anyone was reading, but I started getting emails saying you've put into words what I'm feeling. It made me feel good that other people were finding support through my blog."
As she corresponded with other "baby loss mamas," Cook found common ground. They all wanted to tell their story and hear from others who had suffered similar losses.
Cook, who works in the nonprofit industry in Minneapolis, said she came up with an idea for a website, called "Faces of Loss, Faces of Hope," where baby-loss moms -- and dads -- could share their experiences.
I'm a part of this community too. My daughter, Kristina, lost her first child, Jeremy, at 27 weeks in 2009. She was only 21 years old and was leaning on me for answers, which I didn't have. That's when I hit the Internet and started finding blogs like "Letters to Stevie." I saw how people were able to turn tragedy into positives, and how by sharing their experiences, they helped not just themselves, but others.
Kevin Bailey also started looking for answers online as he tried to help his heartbroken wife Angie Bailey following the loss of their son, Aiden. The Baileys, of Huntington Beach, Calif., were just 17 days shy of their baby's due date last August they learned during a routine doctor's visit that his heart had stopped beating.
Kevin noticed that while some fathers may lurk on loss websites, few are active.
"In the baby loss community, there are not a lot of guys who are putting their feelings down in blogs," said Bailey, who began blogging after his wife suggested it as a way to deal with his sorrow.
In his first post, Kevin told of his brief time with Aiden. How he begged God to let his son breathe.
"Two months and 14 days ago I had a son. ... His name was Aiden, and he was the spitting image of his old man: Tall, skinny, fiery red hair ... and eyes like... Well, I never got to see his eyes, and that's something I regret profoundly. You see my son, my little Aiden, was stillborn at 37 weeks," Bailey wrote in October 2010 in the blog called "Life Askew.'"
"So that's the story. The reason my life is on a different path than it should be. The reason that inspired me to make this blog. Not everything I write here will be about Aiden, but everything will surely be inspired by how he has affected my life," he wrote.
Soon Bailey, like Cook, discovered he had readers. They left emails of encouragement. They told him their stories.
Blogging, Bailey said, has "helped reaffirm that I'm not insane."
Connecting with others who've gone through similar experiences and getting support from them helps parents through the grieving process.
"This is a very helpful social media site for women who typically experience what is known as disenfranchised grief, particularly with miscarriages and stillborn losses," said Debra Dobbs, an assistant professor in the College of Behavioral and Community Sciences at the University of South Florida in Tampa. "Disenfranchised grief occurs when losses are not socially supported."
The Baileys experienced that social disconnect. "People went back to their regular lives and it felt as if they expected us to do the same," said Angie Bailey, who shared her feelings in a blog called "Expectations Revised."
"I try not to identify myself solely as the mom of my dead son. Although, as of right now, that's honestly all I've got. I hope this status will change one day," she wrote.
She said others blogging about baby loss "allowed me to vent when I needed to and helped me feel like what I was experiencing was okay. We have a tremendous online fellowship."
In the almost 17 months since Jennifer Klock-Davis lost her son, Avery, she's also found comfort from those who have experienced child loss. She was just over 35 weeks pregnant when Avery's heart stopped due to an umbilical cord accident.
Klock-Davis, of Pasadena, Md., wrote about Avery's death on "Faces of Loss." Now, she is a leader for a support group which offers parents who are part of the "Faces of Loss" community a chance to share their grief in person, in a more traditional setting.
"It is extremely important to be with others who have experienced a baby loss, because grieving itself is extremely isolating," Klock-Davis said.
"The power of social media is that we can find communities to connect with others outside our regular social circle," said Kelli Burns, an assistant professor at the University of South Florida's School of Mass Communications. "The simple message that is learned through participation in these communities is that you are not alone."
My daughter and I will always be part of the baby-loss community, and we'll always be grateful for the support we received. But in June of last year, we were blessed with a new chapter in the evolution of our family life: Following a high-risk pregnancy, beautiful Kaitlyn Nicoletta was born on June 8, 2010.
Letters to Stevie: http://dearbabycook.blogspot.com/
Faces of Loss, Faces of Hope: http://facesofloss.com/
Life Askew: http://askewlife.blogspot.com/
Expectations Revised: http://expectationsrevised.blogspot.com/
Mayo Clinic miscarriage information: http://www.mayoclinic.com/health/miscarriage/DS01105