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Families of deceased babies gather to share support, loss

Published: Friday, Oct. 11 2013 5:24 p.m. MDT

Shenara Jaynes goes through a scrapbook with her two daughters Shealyn, 9, and Kaila, 1, filled with pictures of their sister Kaila in their home on Thursday, Oct. 10, 2013. Shenara and her husband Mike lost their second daughter Kelsie when she was just 26 days old in 2005, and they will be a part of the Utah Share Walk on Saturday, Oct. 12, 2013, where families will release a balloon into the sky as their child's names are read aloud.

Matt Gade, Deseret News

LAYTON — Bringing her new baby home from the hospital was pure joy for Shenara Jaynes. It was her second daughter, and she came highly anticipated.

The baby girl weighed 7 pounds, 6.5 ounces, and had lots of blonde hair. She had "the cutest little cry," loved to snuggle and hated being naked, her mother recalls.

"Kelsie is a huge part of our lives, like any of our other children," Jaynes said.

The only difference is that Kelsie died in March 2005, after just 26 days of life.

At the time, doctors couldn't determine what happened. Tests were inconclusive.

Jaynes said Kelsie just stopped breathing, but it turns out she had a genetic condition that led to the premature death.

Jaynes' baby is one of about 4,000 who die each year in the United States of sudden infant death syndrome, suddenly and of no apparent cause. Similarly, 26,000 babies never take their first breath and are stillborn each year, according to the U.S. Department of Health and Human Services.

"I still think about her every day," said Jaynes, 27, fighting back tears. "It gets easier as time goes on, but I still miss her."

Her sometimes silent cries, yearning to hold her baby again, are matched by hundreds of other moms and dads, aunts and uncles, brothers and sisters, grandmas and grandpas and many friends throughout the state.

Those in northern Utah will gather Saturday at the ninth annual Utah Share Walk to Remember to honor the memory of their tiny loved ones.

"You don't want anyone to have this happen to them, but you're so glad you have them all there when it's you," said Natalie Clemens, 30, who gave birth to a stillborn baby boy, Luca, in April 2010.

Clemens noticed that Luca stopped moving at 37 weeks, and an ultrasound confirmed that his heart had quit beating. Luca was later delivered with a true knot in his umbilical cord, which proved to be fatal for him.

Clemens said it was a relief to know the cause of his untimely death, as more than 40 percent of stillbirths go unexplained.

"There was nothing anyone could do, which was good to know, but still maddening," she said.

The Share Pregnancy and Infant Loss Support organization, which provides help to parents and families who have lost babies at any stage from conception to a few months after birth, sent volunteers to visit Clemens at the hospital. They arranged for photographs, hand and foot impressions and ink prints on paper, and gave her lots of little mementos of the day her baby died.

Those trinkets have become invaluable to her, but Clemens is also reminded of her third son whenever she sees rainbows, hears a sentimental song, or watches a balloon drift into the atmosphere to the point of disappearing. She says she likes to think it reaches him in heaven.

"Things like that help me to remember he's real," Clemens said. "Sometimes you get so far removed from it and you think, 'Did that really happen?' But this reminds you that it did and that you love him and miss him, and hopefully you'll see him again someday."

The annual walk gives her and her family — Luca's father, two older brothers and a younger one — a chance to remember their "angel brother," as they call him.

The experience, Clemens said, also helps her appreciate her living children even more.

"I'm still a normal mom. I still yell at my kids, and I get frustrated at times and wish I could be a better mom," she said, "but I do think I cherish them more than I would have if I had not lost Luca."

Her sentiment is matched by Jaynes, who said that after she got over the various stages of grief from losing her daughter, some of which still come up once in a while, she was able to take pride in the family she still has with her.

But Jaynes said she hopes others understand that "it's not something we ever get over."

"Don't be afraid to talk about my baby with me," she said.

Support groups emphasize that the loss becomes a part of their life, and that life must also go on.

"He'll always be in my heart, but he wouldn't want me to miss out on life," Clemens said of Luca.

The Share organization helps participants understand that sporadic bouts of emotion are completely normal. It exists to "provide support toward positive resolution of grief experienced at the time of or following the death of a baby," according to Share's mission statement. "This support encompasses emotional, physical, spiritual and social healing, as well as sustaining the family unit."

Events held throughout the year bring struggling families together.

"It is so healing, and it warms your heart to see the camaraderie of people who have been through similar loss," said Marci Nellessen, Jaynes' mother and Share event organizer.

Nellessen attended Share's bi-monthly support groups with her daughter after Kelsie died, and she, too, has benefited from the support.

"The hardest part about losing her was seeing my daughter go through that grief and not being able to help her," she said. "As a mom, you just want to make things better. It tears at your heart to see your child go through that."

Her continued involvement with the group, Nellessen said, helps "make sense of all the chaos."

The walk, one of several held in October throughout the country, attracted nearly 800 people last year. It is held annually to commemorate Pregnancy and Infant Loss Awareness month. More information can be found online at www.utahshare.org.

Registration for the walk begins at 10 a.m., and a brief program starts at 11 a.m. at the Ed Kenley Amphitheater, 403 N. Wasatch Drive. Families will walk carrying a balloon that will be released when their infant's name is read aloud.

"We welcome anyone who has lost a baby, any of their family or friends, too," Nellessen said. "We're there to remember and honor our babies' memories, to walk the steps they were never able to take."

Email: wleonard@deseretnews.com, Twitter: wendyleonards

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