Only on ABC-7: Family heals loss of child by sharing experience

The March of Dimes is holding its annual March for Babies on Saturday. The organization aims to raise money to find and fight the causes of prematurity, the leading cause of death for babies.

One of the event’s biggest supporters in El Paso is the Spohn family.

Mom Wendy and dad Stephen, along with son Lukas, 11 and daughter Elena, 5, are a happy bunch.

But it took time to reach that point.

“Our daughter was born on June 2, 2006, while we were both stationed in Germany,” said Stephen. “We weren’t aware of any birth defects until a few hours after she was born.”

Julia Lani Spohn was born with an atrioventricular septal defect, meaning she had three chambers in her heart instead of four, and polysplenia, or having multiple spleens. She was also diagnosed with heterotaxy syndrome, a disorder that results in certain organs forming on the opposite side of the body, and biliary atresia, a rare liver disease found only in infants.

For four months, doctors in Germany and at military medical hospitals in the United States tried to correct the issues with Julia’s heart and liver. While recovering from an open-heart surgery, the infant developed sepsis and took a turn for the worse.

“It was a rough day, that day,” said Stephen. “The doctors tried to do everything, but it came to the point of, ‘OK, you’re the parents. We’re doctors, but we can’t make this decision (to) keep your daughter in a comatose state for so long, or say goodbye.'”

The Spohns decided to end her struggle to live.

“We held her, they unplugged the chest tubes and we said our farewells,” Stephen said, pausing while his wife looked down at her lap to a diary where she chronicled Julia’s short life.

Wendy told ABC-7 the journal began as a way to remember what happened from the time she went into labor, and every moment after.

“When the complications came up, I had a feeling I was going to have to write this down,” Wendy said.

Wendy ended up using her notes to pass along information on Julia’s health to family and friends across the country though a blog and social media. After Julia died, she compiled the diary with pictures, eventually creating a hardcover book dedicated to Julia’s memory.

“I have those memories forever, even though they’re not up in here anymore,” Wendy said as she gestured to her temple. “They’re all written down that I can share with everyone.”

The Spohn family decided to turn their grief into giving. They discovered the March of Dimes and its annual March for Babies fundraiser in 2008 while stationed in Maryland. The family created Team Julia Lani and began sharing their story, fundraising for the organization and eventually becoming an ambassador family. Wendy’s journal is often distributed to families dealing with loss, so they know they’re not alone in their grief.

“Doing the March of Dimes (March for Babies), we realized that her life didn’t end that day,” said Stephen. “Her life on this planet ended. But her purpose in life just began.”

Stephen also said that they never hesitate to share Julia’s story and their struggles with her loss. He said they encourage people to talk and ask questions because it helps eliminate the taboo that seems to surround the death of a child.

“The four months she was here on Earth were very short and we loved her every minute of it, but she’s done so much more for us as a family,” Stephen said. “We’re just blessed everyday that God gave her to us, and to know her and know that she’s still with us and with other people, too.

“It started taking on a personal meaning to a lot of people,” Stephen added. “Someone told me, ‘I’ve never ran a marathon before, but then I thought of that little girl fighting for her life and I went out and did it. I did it for little Julia.'”

The Spohn family is growing, both emotionally and in size. Elena, who is now 5, is lovingly referred to as their “rainbow baby” by Wendy and is constantly doted on by her brother Lukas, 11. During the interview, Elena was holding a framed picture of Julia and talking about her big sister, drawing smiles from her family.

“The pain never really goes away,” Wendy said. “But when you can share it with others, it keeps her memory alive. She’s with us all the time.”

Those interested in participating in the March for Babies can visit kvia.com and click on the link to the March of Dimes website. Participants can create a new team or join an existing one, including Team Julia Lani and the KVIA team.

The walk is Saturday, May 14 at the Fountains at Farah. On-site registration is at 7 and the walk begins at 8 a.m.