A Tacoma family's baby girl never woke up. They've been fighting for her legacy ever since

Feb. 29—OPINION AND COMMENTARY — Editorials and other Opinion content offer perspectives on issues important to our community and are independent from the work of our newsroom reporters.

Looking back, I still get choked up. I've been doing this a long time. There aren't many columns that do that.

I remember meeting Shayna Raphael for the first time at a Starbucks in Lakewood six years ago. She told me about her daughter, Claire, who died of asphyxiation in her sleep.

Officially, Claire succumbed to "sudden unexpected infant death," or SUID. She was just shy of 11 months old when she died, put down for a nap under the supervision of an in-home childcare provider on an adult mattress that wasn't firm enough for a young child. Like roughly 3,400 infants across the country each year, she never woke up.

Most of all, I remember a mother's unmistakable fear:

Shayna was terrified her baby girl would be forgotten.

Claire's obituary, published in The News Tribune on April 28, 2015, described a child who "loved to be swung by her sister Lily at the park, chase our dog around the house, throw her food, and giggle when you blew on her face."

Sitting across from Shayna that first time, three years after the death of her daughter, she was fighting — visibility, through grief, tears and deep anger — to keep Claire's memory alive.

"There's nothing good about (Claire's) death," she told me back then.

"But if something could happen that's going to prevent it for other children, I think that's really important."

I met Shayna and her husband, Justin, again last week, at a different coffee shop, on a warmer day. They were waiting for Claire's big sister, Lily, now in seventh grade, to finish her day at school.

This time, it wasn't fear that struck me. It was hardened resolve and determination.

Since we last spoke, the Raphaels launched the nonprofit Claire Bear Foundation in their daughter's name. The family also celebrated the opening of a cutting-edge CPR training room at Mary Bridge Children's Hospital they funded and championed — all while increasing SUID awareness and prevention nationwide.

That much has changed. A lot has.

Justin and Shayna celebrated the birth of another daughter, Jules, Lily and Claire's little sister, they told me.

Shayna now has more than 50,000 followers on TikTok, where she shares safe sleep tips, personal stories and support to young parents who need it.

She also sits on the Tacoma-Pierce County Health Department's SUID review team and is an American Academy of Pediatrics national collaborative focused on safe infant sleep.

Other things haven't changed at all, I learned.

It's been almost nine years since Claire died. There's still nothing good about it.

Through it all, Shayna has done what she set out to do.

She's worked every day to ensure her daughter will never be forgotten.

She's found a new footing in life by committing herself to the cause of safe sleep advocacy and SUID prevention.

"In Judaism, we talk about how someone lives on through their memory," Shayna told me, describing her quest to honor Claire

"This is a powerful way for me to help her live on," she said.

Powerful is right.

Founded in 2018, the Claire Bear Foundation has raised and donated more than $90,000 to charitable organizations, targeting nonprofits and campaigns focused on infant and child safety, education and outreach.

More than 100 families have received safe cribs free of charge through the foundation, according to data provided to The News Tribune.

Thousands of dollars in funeral and medical expenses have been provided to families grieving the loss of a child, and thousands more have been distributed in local college scholarships.

Closer to home, the Claire Raphael Training Room at Mary Bridge — where Claire was rushed on the day she died — has helped to train hundreds of nurses and technicians working at the hospital. The facility provides critical preparation for the life-or-death infant resurrection scenarios Mary Bridge providers encounter at work.

The creation of a CPR training room was inspired by Ted Walkley, a now-retired Mary Bridge doctor and medical director of the hospital's ER who counseled the Raphaels in the days, months and years following Claire's death — helping the family come to terms with what happened.

When the Raphaels settled a civil lawsuit related to Claire's death, what didn't go into Lily's college fund went to Mary Bridge, where Walkley's vision put it to good use.

"We had really done everything," Walkley told me in 2018 of the Mary Bridge emergency department's attempts to save Claire's life.

"Those words, which I've used before, and in honesty, really offered them some solace," he added.

"I thought, 'Well, let's make sure we can say that to every child that comes into Mary Bridge.'"

According to Jaime Newberry, a professional development specialist at Mary Bridge, the CPR training facility, which is equipped with a child-size mannequin that breathes and mimics human vital signs, has become "an integral part" of the hospital's emergency department and inpatient staff training.

It's also more than "just a space," Newberry said.

"Claire's picture is featured both outside and inside the room and we tell the story of Claire to all who use the room. We want our nurses to know why we were gifted such a wonderful training space and why it is important that we continue to practice, learn and grow," Newberry told The News Tribune.

"It's for Claire and all the other children in our community — they all deserve to be treated by the best."

Today, the Claire Bear Foundation is raising money to build a new-and-improved CPR training room at the new-and-improved Mary Bridge, Shayna and Justin told me. The expansive new pediatric facility is currently under construction, slated to open in 2026.

It's the latest challenge Shayna has taken on, she explained. The task includes preparing for The Claire Bear Foundation's first auction and benefit in April.

Money raised during the event at Clover Park Technical College will go toward the construction of a new Claire Raphael Training Room, the Raphaels said, which they hope will include mobile training capabilities for nurses and technicians across the region.

Six years after I first met Shayna, she's more driven than ever. She's saved lives while forging a legacy for Claire.

Fighting for her daughter's memory is a big part of what's held the grieving family together, she said.

"When Justin and I got home from the hospital that night, we talked about it, and promised each other that this wasn't going to tear us apart," Shayna told me.

"It's not easy, but I think it's easier than not having it," she said of her work.

"I've learned that tremendous heartache and tremendous joy can coincide, and they can be felt at the exact same time."

___

(c)2024 The News Tribune (Tacoma, Wash.)

Visit The News Tribune (Tacoma, Wash.) at www.TheNewsTribune.com

Distributed by Tribune Content Agency, LLC.