My husband and I were up at our cabin in McCall, ID on August 7, 2020.  My husband, Steve, had just come inside after working in the yard and I was apparently making toast in the kitchen when I told him I felt like I was going to pass out.  (I don’t remember anything about the event). He ran around the counter and caught me as I went down.  I started turning blue and stopped breathing.  After quickly opening the front door for the EMTs and calling 911, he placed the phone on speaker and started CPR.  The paramedics arrived quickly and shocked me back to life. I was then flown down to the larger hospital in Boise, ID, where I stayed for 4 days.  During that time, I had an ICD implanted due to my Long QT.  (I had an ICD years ago, but it had been removed in 2007 due to an infection, and not replaced.  Some doctors back then felt that maybe I didn’t really have Long QT, but it is now a definite diagnosis and hopefully, soon I can have gene testing to verify which kind I have).

I’m so thankful that even though my husband hadn’t had CPR training for many years, those lessons came back to him in an emergency!  I’m also grateful to our local McCall Fire and Police departments for their quick response.  I was able to go back up to McCall 7 weeks later and thank my heroes at the Fire Department. 

On January 13th, 2019, I woke up to a seemingly normal Sunday. I was a healthy, 30 year old mother sharing breakfast with my 11 month old son and my husband, Scott. When I went to get our son ready for church, Scott had a feeling that he needed to come check on us. What he walked into was nothing normal. Scott found me unconscious, pulseless, and turning blue…clinically dead. His prior training as a lifeguard and our recent CPR class gave him the tools necessary to act fast. He started compressions and called 911. With incredible guidance from our 911 dispatcher and fire & ambulance there in minutes, I was quickly receiving shocks and being transported to the hospital. 

I had CPR within minutes, shocks from an AED, and near immediate care, yet my family was still told to prepare for the worst. I was put into a therapeutic hypothermia coma, and Scott spent the next several days talking to me, praying, and not knowing what life would look like for us on the other side. We are one of the very few lucky ones where I miraculously made a full recovery, but that is far from the case for almost all cardiac arrests. The only way to survive Sudden Cardiac Arrest is with bystander CPR, and the only way to help more people survive is to spread awareness on CPR and AED training. 

Do you have an SCA survivor story? We’d love for you to share it with us! Just send a short video (1-3 minutes long) or a written story to SADSblog@SADS.org. 

My name is Sarah, I am 55 years old, living in Saskatchewan, Canada.

On December 28th, 2018, I was attending the memorial service for my mother-in-law along with my immediate and a few extended family members.

I had just finished my tribute and was giving closing remarks. I went back to sit down beside my family, and without warning, my heart stopped.

Because I have some history of fainting, my husband didn’t realize what was going on at first, but very quickly realized that this was different.

My family members started CPR almost immediately, and my son ran outside to a neighboring business to get an AED as there was none in the building.

The AED was next door, but the business was closed and he wasn’t able access it.

The first responders were there within approximately 10 minutes and thankfully brought an AED with them, which they then used and were able to get a pulse.

I was intubated and brought into the hospital, where they then kept me in an induced comma for 48 hours. 

I awoke without neurological damage, which was a miracle, but had no recollection of what had happened.

I was diagnosed with left bundle branch block and mild cardiomyopathy.

After genetic testing, they have found this to be a genetic issue. 

I now have had an AED and Pacemaker implanted.

It has been over a year now, and I am grateful for life, for second chances. Without the quick responses from my family and first responders, I wouldn’t be here to tell my story today.

This event was not only extremely traumatic for myself, but for family as well. It has impacted us in many ways and we are still healing and learning how to cope with what happened.

No longer do we ever walk into a business or public place without looking for or noticing an AED.

We have donated funds to install an AED in local businesses, and continue to raise awareness about the importance of CPR and having an AED available for anyone, anywhere, 24 hours a day. I would like to see AED’s in cities and towns just like a fire extinguisher, where you would always have access to it if needed.

 My hope and prayer through this is all is that no other family will ever have to go through something like this.

Aurora went into tachycardia in February 2019, shortly after turning 2. She has Long QT Syndrome and she had RSV and rhinovirus. It was 3AM and my husband and I used our AED and CPR to save her life before paramedics arrived. She is now 3. 

Name: Susana Rodríguez 

Age: 32

Which SADS condition do you have? Long QT Syndrome

How are you treated? Beta blockers + always carry my AED to training.

How were you diagnosed?

When I was 28 I started to have abnormal findings in my EKGs, like inverted and notched T waves. As I race at elite level sports in triathlons and athletics, I do heart control every year so when this started I was asked to do ECo image studies and an MRI. Finally in December 2019, in my last stress running test, very abnormal QT prolongation was detected during effort and 4 min recovery. I was diagnosed with Long QT Syndrome finally at the end of January. I feel lucky to know this because at least there is an option for prevention. I only had some tachycardia episodes without other symptoms.

What has been the biggest challenge you’ve faced in living with your diagnosis?

The hardest part for me was to realize that as an athlete, what I love most could be a potential danger for me. Receiving this diagnosis as a para-triathlon world champion and on my final build up for Tokyo 2020 Paralympic games (I have a very severe visual impairment) was stressful. I also found it hard to start beta blocker treatment because although it is good for me, it has given me some side effects such as dizziness. The first days I carried my AED to training it was hard to add this gear to my equipment because as a doctor I really know what sudden cardiac arrest means.

What is one positive thing that has come out of your diagnosis? 

I have improved a lot in choosing which my priorities are in life and I feel good that I know about the condition so that I can take care of my body. I now understand the need of resting and listening to my body as an athlete when I feel tired. Beta blockers have made me feel very low in training but with time they have made me have a stronger attitude towards effort. As a doctor now I realize more how important is giving clear information to patients so that we can help them in decision making. I feel pleased that my cardiologist Dr. Alvarez was as clear as possible and listening to her was very helpful.

What encouragement or advice would you give someone who has just been diagnosed with your condition?

I think the best advice to give to someone in a similar situation is think on a daily basis and don’t stress about the future. Do things you enjoy and don’t be ashamed of having this condition. We can live an almost normal life.