Filling the void left by stillbirth
Dead babies aren't sexy.
It's a harsh observation from a mother who endured the often insensitive responses of friends and family members after the loss of a child via stillbirth and was stunned by the lack of medical and charitable efforts to prevent late-term infant deaths.
"People don't want to talk about it. Nobody wants to talk about it at all," said Mindy Mueller, who delivered Abigail, at 37 weeks of pregnancy. "Not talking about it is exactly why it keeps happening."
It happens at a rate of one in 160 pregnancies in the United States, roughly 26,000 babies delivered stillborn every year, according to the American College of Obstetricians and Gynecologists. There are an estimated 2.6 million stillbirths world-wide each year.
Yet the response is muted, at best.
Charities raise millions of dollars to combat deadly childhood diseases. In Milwaukee, the Briggs & Al's Run to support Children's Hospital in Milwaukee generates roughly $1 million each year to provide care for sick kids.
In contrast, Mueller hopes to raise $20,000 through the three Abby's Runs she launched in 2010 as an outlet for her grief, and an attempt to prevent others from suffering a similar loss.
"After we lost Abby, I would run so far that I was so exhausted I couldn't cry anymore," Mueller said. "One day, up north, I was out running and it occurred to me that people had charity runs all the time, because I signed up for them all the time."
Mueller, of West Allis, organized the first Abby's Run in October 2010, in Uolo, her tiny Wisconsin hometown on the shore of Lake Superior. This year, the effort has grown to include three events, a run in Uolo on Saturday, one in Whitnall Park in Franklin, on Oct. 20 and one in Barrington, Ill., on the 27th.
A finance analyst at GE Healthcare in Waukesha, Mueller also tapped into the global network of colleagues and initiated a run in Juarez, Mexico, in 2011. Roughly 300 people, many of them GE employees participated there.
Others are invited to participate via the internet, running on their own and making donations via the web.
Proceeds from the 5K runs and family walks are directed to the Star Legacy Foundation, an organization started in 2006 by a woman in Eden Prairie, Minn., who delivered a son, Garrett, stillborn at 38 weeks. Like Mueller, she dove into the medical research to find out why, and found little information.
"I went through every one of my old nursing textbooks and found one paragraph on this issue," said Laurie Wimmer, a nurse practitioner.
The Star Legacy Foundation supports stillbirth research and, in October 2011, organized a Stillbirth Summit in Minneapolis, Minn. One-dozen researchers presented their findings in a rare session organized to identify trends and common causes.
Due in part to a lack of consistent reporting requirements and the corresponding lack of research, no cause is found in roughly half of stillborn cases.
Star Legacy also provides support to the families who have endured a loss.
Again, the group is attempting to fill a void.
Too often, the response from family and friends is to downplay the loss, to suggest the parents have another child and move on. The death of an infant who never lived is somehow viewed as less traumatic than the loss of a child who died after weeks, months, or years.
Mueller knows this is wrong.
"I felt this baby every single day and bonded with her," she said. "You're ready and you have dreams and expectations of this child. Then you're told no. Your arms ache because you're supposed to be holding her. You have to relose her every day until you can accept the fact that you lost her."
Born on Feb. 28, 2009, Abby looked perfect. Six pounds. A head covered with dark hair.
Guilt compounded Mueller's grief.
"I felt like it had to be my fault, because the only person in charge of protecting her was me. I was so afraid that she had suffered, and that thought was unbearable.
"One of the reasons I do this, I don't get to do anything else for her. I don't get to do birthday parties, or her hair or bath time. This is the least I can do."
Leading Abby's Runs, Mueller meets other parents who have endured similar grief. They share stories, talk about a subject that is often considered taboo. They remember a child, rather than attempt to forget.
"I cannot pretend that it didn't happen or she didn't exist," Mueller said. "I don't want other people to forget that she existed. That is why I named this event after her. I like to hear people say her name. I need to give some purpose to this loss."
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