Mom’s New Year’s resolution: Solve the deadly medical mystery of SUDC – Asbury Park Press

After 2-year-old Vienna Savino succumbed to little-known SUDC in 2017, her mother vowed to something about it. Now she’s launching a nonprofit.

Denise Wunderler Savino has a New Year’s resolution, and it’s far more substantial than your run-of-the-mill pledges to eat better or travel more.  

It’s to save kids from the tragedy that befell her 2-year-old daughter.

The 46-year-old Holmdel resident is founding a nonprofit fueled by the memory of young Vienna, whose passing in November of 2017 was classified as sudden unexplained death in childhood  or SUDC.

Not to be confused with the better-known sudden infant death syndrome, which pertains to those under age 1, SUDC is a category of death in children ages 1-18 that remains unexplained after a thorough investigation. It was attributed to the passing of 389 U.S. children in 2017 and was the fifth-leading cause of death for those ages 1-4.

“The goal is to make this not a medical mystery anymore,” said Wunderler Savino, a doctor who serves as a physician for USA Volleyball. “The more people who know about it and care about it, funding will follow.”

In April the Asbury Park Press chronicled Vienna Savino’s story — how the bright, bubbly toddler fell asleep one night and never woke up. The autopsy’s verdict left her parents both devastated and determined to raise SUDC’s profile. It’s rare and nebulous enough to fly under the public’s radar, and the medical community’s, too.

“The problem with SUDC research is no one really knows where SUDC fits,” Wunderler Savino said. “Is it cardiac, neuro, infectious? One (academic discipline) is not grabbing onto it and saying, ‘This is going to be our baby.’”

WATCH: For more on SUDC, check out the video atop this story. 

Some privately funded research is taking place, and the new nonprofit, to be titled Team Vienna 4 SUDC Awareness, aims to expand that. But the charity will have intangible missions, too, like spreading the word and supporting fellow grieving families. That’s what the Essex County-based SUDC Foundation has done for Wunderler Savino and Kim Frankle, a Manalapan resident whose 17-month-old son Brody died of SUDC in 2012.

“I don’t know what I would have done without them; I would have felt alone and helpless,” Frankle said. “It’s bad enough that my son passed away. To not have an answer why, it’s something you question every day. If I could find an answer, that would mean everything.”

Needless to say, Frankle is rooting for Wunderler Savino’s initiative.

“It’s wonderful that she’s doing that,” Frankle said. “I think it will help her with her healing process and help SUDC, and hopefully one day we’ll find an answer.”

It starts with awareness. To that end, Wunderler Savino is on a branding crusade. There are “Team Vienna” T-shirts, and a logo for the nonprofit is in the works.

“I wear a Team Vienna T-shirt every single day,” she said. “I have about 30 colors.”

With the assistance of noted designer Lauren Farrell, who lives in Westfield, a line of Vienna “mommy and me” handbags is on the way, with all proceeds earmarked for the charity. Wunderler Savino welcomes anyone else who wants to donate some guidance, from website design to legal expertise.

“People have been so generous, but there’s still a ton of work to be done,” she said. “Right now it’s more than one child a day (dying from SUDC). That breaks my heart to no end, and it was broken enough when Vienna died. That’s the fuel besides Vienna’s memory: all of those families who are going to suffer the heartache.”

Wunderler Savino’s long-term vision includes launching an annual talk with first-year medical-school students, starting at Rutgers and Rowan, because they won’t be learning about SUDC in the classroom. She would plant the seed about SUDC, with the help of Team Vienna T-shirts for all participants.

“There’s power in numbers, which is how I’m trying to tackle this,” she said.

Two things keep Wunderler Savino going: her surviving children and the hope that Vienna’s tragic passing can save other kids.

“My daughter can’t make waves in the ocean for herself anymore,” she said. “We need to do it for her.”

For information about upcoming events, or for ways to help, visit www.facebook.com/TeamViennaSUDCawareness/ or email TeamVienna2018@yahoo.com.

Staff Writer Jerry Carino: jcarino@gannettnj.com.

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