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Nonprofit offers support to families of stillborn babies

December 25, 2014

POWELL, Wyo. (AP) — In the months leading up to their son’s birth, Larisa and Jim Barth heard his strong heartbeat, felt him kick and chose his name: Asher Finn.

But on the morning of his due date — Oct. 9, 2011 — Asher was born in silence. He did not cry or take a breath of air.

Instead of preparing for life with a newborn as they left the hospital, the Barths planned their son’s memorial service.

Unfortunately, many families share the pain of losing a baby to stillbirth or miscarriage. As many as one in four pregnancies ends in miscarriage. In the United States, one in 160 babies is stillborn, according to research from Seattle Children’s Hospital.

The loss of a baby can be terribly isolating for parents.

“No one wants to talk about a baby dying,” Barth said. “We act like it doesn’t happen.”

To help families recognize their babies’ existence, Barth and her husband founded the nonprofit Held Your Whole Life, which provides personalized jewelry to parents whose babies were lost to stillbirth or miscarriage.

For some, the heart-shaped necklace or keychain with their baby’s name or initials may be the only tangible item they have to remember their baby.

“People say to us, ‘That’s all we have,’” Barth said.

She came up with the name Held Your Whole Life since Asher and other babies didn’t know life outside of a mother’s womb.

“They were only ever held,” Barth said.

Since Held Your Whole Life was founded in 2012, more than 6,000 pieces of jewelry have been sent to families free of charge.

The Barths lived in Montana when they founded the organization, and now they base it out of their home in Powell. Jim became pastor of First United Methodist Church this summer, and the couple moved to Powell with their nearly 2-year-old daughter, Kamari.

Shortly after Asher was born, a nurse brought in a fetal death certificate for Jim to sign.

“If Asher would have had one breath of air, he would have had been given a birth certificate,” Barth said. “It was like he didn’t even exist.”

Even though Asher and other babies were much-anticipated and loved children, they’re often referred to as “fetal demises,” Barth said.

“Acknowledging their life is so important,” she said.

The Barths were given “Thumbie” jewelry with Asher’s handprint, and they realized how comforting it was to have something representing his life. They knew personalized jewelry would be a blessing to other grieving families, but those particular charms cost hundreds of dollars.

“How many families can do that?” Larisa Barth asked.

They started looking into other organizations that provide gifts for families who have lost babies, and found some that helped with funeral costs and another that provides stuffed animals that are made to weigh the same amount the baby did. But they didn’t find any that made personalized jewelry at a reasonable cost.

“I didn’t want to do something that was already being done,” Barth said.

Within a few months of launching Held Your Whole Life, they had given more than 1,000 personalized necklaces to families across the United States and worldwide.

“Seeing our Asher Finn’s name brings so much comfort, and we wanted to offer that to other grieving families,” Barth said on the organization’s website.

In addition to the free personalized gifts, the organization also has become a network of support for grieving families.

Unfortunately, Barth now also understands the pain of a miscarriage. She suffered a miscarriage this fall with the couple’s third child, Ember.

After Asher’s stillbirth, Barth was diagnosed with a rare blood-clotting disorder that caused the complications.

For parents who have lost a baby, it’s often therapeutic to have a creative outlet like art, crafts or gardening, Barth said.

Working on something creative to honor their baby can be a way to parent the child they didn’t get to raise.

“Even though I didn’t have a baby, I still had a need to parent,” Barth said. “In the beginning, it was all about what I was doing for Asher.”

Held Your Whole Life has become an outlet for Barth, a way to grieve, heal and honor her son’s memory while helping other families.

Now, the Barths are raising a busy and happy toddler. Their daughter Kamari will turn 2 next week. She is their “rainbow baby,” a term used for babies born following a miscarriage or stillbirth.

“There is hope after the storm,” Barth said.

Held Your Whole Life accepts new requests for a necklace or keychain on the first of each month, and in less than an hour, it receives hundreds of requests.

Barth asks the organization’s volunteers how many personalized pieces they can make each month, that’s how many online orders are accepted.

One month, they allowed a longer window for requests and received 800 in a day. It took months to get caught up on orders after that, she said.

“We only ship as many as we have the funds for,” Barth said.

Parents only pay a $3 charge to help with shipping costs.

The organization recently had to stop sending gifts internationally, due to issues with customs in other countries and shipping costs.

A team of 12 out-of-state volunteers helps create the personalized necklaces and key chains each month, but Barth said she needs more local volunteers to help with finishing orders, packaging and shipping.

“I would love more help,” she said.

She also needs help with grant writing. The nonprofit depends on donations, and recently started selling personalized items for grandparents or other relatives as a way to help fundraise.

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Online: www.heldyourwholelife.com

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Information from: Powell (Wyo.) Tribune, http://www.powelltribune.com

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