Dr. Janette Strasburger and Dr. Bettina Cuneo were my lifelines when I was pregnant.

I heard Dr. Cuneo speak about pregnancy at a SADS conference. What really stood out to me was the possibility of non-invasively testing a baby for Long QT in utero. I knew I was only a year or two from trying to start a family, so I introduced myself, and was sure to get her contact information.

When I became pregnant, and was meeting with various maternal fetal medicine specialists and genetic counselors, I just wasn’t comfortable with all of the uncertainty. This was a great group of doctors and professionals, but I often felt like the most knowledgeable person in the room when it came to Long QT and pregnancy. So I emailed Dr. Cuneo to get her input. She immediately responded, answered all of my questions, gave me the guidance I was looking for, and connected me to a study in Wisconsin that could detect Long QT in the baby.

Dr. Strasburger met my husband and I in Wisconsin and had the unenviable role of being the one to tell us that the baby did show prolonged QT. She was so compassionate and thorough answering all of our questions. We thought this was the end of our relationship and felt so much more informed heading back to New York.

At upcoming medical appointments: prenatal check-ups, consultations with anesthesia and consultation with pediatrics and the NICU, I was ready to share what I learned. But I didn’t have to. Each of these specialists opened up my file while talking with me and showed me an entire list of background and instructions that Dr. Strasburger had shared with them. Everything from do’s and don’ts with various medications, what to look for regarding the baby’s heart rate, and the use of magnesium or calcium and other clinical implications that fly way above my head.

I finally felt like my care team was prepared for me and my baby. Dr. Strasburger made herself available to my doctors for any questions they had, lending her impressive and rare expertise.

Years later, when I saw Dr. Strasburger at another SADS conference, I teared up a bit as I hugged her and introduced her to my parents. We’re all so grateful to her and Dr. Cuneo—VIPs in the Tolosky-Russom world.

To make a contribution to our Medical Education fund in honor of your family’s VIP doctor, click here.

If you’re at work, out shopping, working out or participating in your everyday activities – could you find the AED immediately if someone were to need it?

I’m the mom of two girls with Long QT and I wasn’t in the habit of noticing AEDs when we were out of the house. It sounds kind of crazy, right? If one of my little girls were to experience cardiac arrest, the fast use of an AED is their best chance of survival – and I didn’t know where they were!

If we needed one, my first step wouldn’t be to get it, my first step would be to find it.  

Becoming more aware to keep my kids safe

A light bulb went off one morning when I was with my family eating breakfast at our favorite country store. I saw an AED on the wall right over my daughter’s head and realized I felt good knowing it was there. It addressed an unknown I hadn’t realized was lurking in my subconscious.

Since then we committed to looking for them at our other regular spots: the grocery store, pharmacy, play places, libraries…

As SADS families, you understand how important this is, too. Maybe you’ve been hyper-aware for years, or maybe my story strikes a chord.

It isn’t just about us, though. We all know that cardiac arrest can strike anyone – at any age – without any warning signs.

What good are AEDs in the community if we can’t put them into action immediately?!

Making our communities safer for all of us

For each minute defibrillation is delayed, the chance of survival falls 10%. Let’s not waste time looking when we could be acting to save a life!

Selfies With AEDs is a social media campaign designed to get people into the habit of noticing where the AEDs are in the places they visit most frequently. Then, if an emergency occurs, they’re ready to jump to action – whether for their own child or for the stranger who needs help. By participating in Selfies With AEDs, people become aware of the AEDs around them.   

It’s super simple:

1. Look for an AED wherever you are
2. Take a selfie (pets, kids, groups included!)
3. Post it on social media and tag @SelfiesWithAEDs.

If tagging isn’t your thing, just send it to us on Twitter, Instagram or Facebook, or email it directly to Melissa at MelissaRussom@gmail.com.

Selfies with AEDs

Want to help launch a movement that will make all of us safer in our communities?

Follow/like us and invite your friends onboard, too. Then post your selfies and keep ‘em coming!

In just under one week, we’ve collected selfies from schools, airports, churches, restaurants, workplaces, government buildings and more…

What are you going to add to the mix?

Should I be worried?

My sister, Christie, died suddenly when she was 24 years old. So, you’d think I would be even more worried about my kids, right?

I feel safe, and I feel that my daughters, Cora (3) and Kate (1) are safe. We are protected because we have been diagnosed and are treated with medication that significantly lowers the chance of the heart going into a dangerous arrhythmia. My sister was not diagnosed, she was not treated, nor was she careful. Why would she be? But, we are.

I have convinced myself that we are all safe, and that thought has been the source of significant comfort since my diagnosis more than ten years ago. It kept me sane when at 26 weeks pregnant for both girls I found out they were also affected by Long QT.

Then, last week, I began to worry.

“Especially because you have two kids with Long QT, an AED would not be overkill. Unfortunately, the first episode could come with no warning sign.” This was the pediatric cardiologist’s response when I asked about purchasing an Automated External Defibrillator (AED) to leave at the preschool Cora and Kate will be starting in the fall.

Many Long QT parents carry AEDs for their children. When that thought has crept up on me in the past I have dismissed it, determined that my kids would not be petrified to live their lives. I couldn’t imagine having my little Cora carrying a defibrillator with her for her very first sleepover. I do not want her living in a bubble. She rides in a car after all, even though automobile accidents are among the leading causes of death for kids.

Still, maybe it’s the thought of fire drills, and medication being dispensed by their teachers and not by me, but I think my most recent visit with the pediatric cardiologist sold me on an AED. Just one, to leave at the school. Baby steps.