From agony to advocacy: How two DOs survived the loss of their 2-year-old daughter

Both Denise Wunderler, DO, and her husband Mike Savino, DO, are physicians. But their combined training could not have prepared them for the death of their two-year-old daughter, Vienna, who fell asleep on the family room carpet while watching TV and never woke up.

Sudden unexplained death in childhood (SUDC) was listed as the cause of Vienna’s death, but not until seven months after she died. At the time, Vienna’s parents were unfamiliar with the term.

SUDC is the sudden and unexpected death in childhood between one- and 18-years-old that cannot be explained after a review of the clinical history, circumstances of death, and an autopsy. According to the CDC, 60 percent of all SUDC cases occur in children between 1 and 4 years old. SUDC is rare, affecting 1.4 out of every 100,000 toddlers.

Vienna’s parents are now seeking to raise greater awareness of SUDC through their nonprofit foundation, Team Vienna 4 SUDC Awareness, Inc (501c3). Dr. Wunderler spoke to the DO about her experience and her advocacy. Following is an edited Q&A.

What happened on the day Vienna passed?
My husband and I were headed to a wedding and our babysitter was set to watch the kids. Vienna had a low-grade fever that morning, nothing alarming. I gave her some Motrin. She was wearing her favorite hot pink Supergirl outfit and having fun when we left.

At 7:02 p.m., we got the call from our babysitter. I was driving. Vienna had fallen asleep on our family room carpet and our babysitter noticed she wasn’t breathing when she picked her up to put her to bed. The babysitter had already called 911, the police were there and the paramedics were coming.

My husband got on the phone with the paramedics. He was using all of these horrible terms that you never want to hear about your own child, like intubation and epinephrine and PEA. I couldn’t react as a mom, I had to focus on driving. He couldn’t respond as a dad, he had to put his doctor game face on. Breaking down emotionally would not help.

We drove to the hospital and Vienna arrived a few minutes after. I held on to her arms and legs and talked to her. Like, ‘Hey Vienna, you can wake up now, Mommy’s here.’ I thought once she heard my voice and felt my touch, she’d be OK. That’s what moms do. They make everything better. And she’s so super special. I never thought, ‘She’s not gonna live.’

After an hour of them working, my husband said, ‘Come here, babe.’ And I knew what he was gonna say at this point. The staff tried for an hour. The next thing I heard was, ‘Time of death, 8:05.’

In the weeks after Vienna passed, I thought to myself, ‘How is the sun rising? How are people going about their day? How is the world continuing on when our little girl fell asleep and never woke up?’

How have you tried to promote greater awareness following your daughter’s death?
We started a nonprofit called Team Vienna 4 SUDC Awareness, Inc. On our site, we share how you can participate in events, serve as a volunteer with the foundation, or donate time or resources.

I’m also focused on education, especially in medical schools. I’d like for SUDC to be included in the first-year medical student curriculum. We need to educate physicians at the beginning of the process. I’ve found that 99 percent of doctors have not heard of SUDC. If you begin in medical school, that knowledge will be carried into residency, across all specialties. And hopefully, this will plant the seed in future physicians’ minds for more research in the future.

What’s been the response to your advocacy?
It’s more than I could have dreamed of in my entire life. It really started because I’m a member of a physician moms Facebook group. My husband encouraged me to share what happened to Vienna in the group. There were 1,300 comments on my post, and it went from there.

I’m a sports medicine physician so I wanted to do something lively and active. Vienna was lively and I wanted to promote life. So I’m like, ‘Let’s do a race.’ I found a race already planned and we became a part of that. I got some shirts made and I thought we’d do a walk with about 20 people and close to 300 signed up.

We proclaimed that day Vienna’s Day. Around the world, from Israel to Spain to Australia to Colombia to Mexico, people wore their Team Vienna T-shirts on Vienna’s Day. And they walked or ran, or biked or hiked or did some other activity, and they shared pics from around the world. I then shared them on our Facebook page to help increase awareness. So far, we’ve raised $10,000, some of which we’ve used for awareness-building efforts.

Every year, what I’ve now named Vienna’s Day of International SUDC Awareness will be the Saturday between Mother’s Day and Memorial Day. In 2019, it was May 18, and amazingly all seven continents were represented. On May 16, 2020, we hope even more locations will join this worldwide project.

In combatting SUDC, what are the most urgent measures that need to be taken?
Awareness is the most important step. Once people know about it and care about it, then more research will be done. Research is the second step. We need to figure out causes, what the core issues are, and how to prevent it. Is it a neurological issue? Is it a cardiac issue? Is it infectious? Is it environmental?

A third step would be uniformity in listing SUDC as the cause of death. These deaths are not being categorized properly or in a uniform way.

We want to be able to accurately categorize SUDC to identify trends and assess those patterns as part of the bigger picture. Is SUDC precipitated by a fever? Or febrile seizures? In medical school, we learn that febrile seizures are benign, and not to be alarmed. But a recent study found that over 40 percent of the children (1-18-years-old) who died from SUDC had a history of febrile seizures.

Why do you think research has been slow in this area?
There is very little money to support this research. There is no public funding. If there is little money, there is little research. You need awareness to highlight the need for research. That’s why awareness is so important.

Also, parents may not want to donate their kid’s brain or tissues or they don’t have the opportunity to do so. It’s a very personal decision, and they’ve never heard of SUDC. We said, ‘yes,’ of course. We need an answer, not just for Vienna, but for other kids as well.

Does being a physician make this situation better or worse?
It’s more challenging because we want to figure it out and we want a medical explanation and there is none. We learned about SUDC in the most tragic way, when it happened to us. Why are these kids falling asleep and not waking up? How does this happen?

Where can people find more information?
My foundation website has more background info along with details on how to get involved and help spread the word.

For further reading:

How my newborn son’s death changed my perspective on medicine

How physicians cope with patient death