Can you tell me a little bit about the SCA?

John:

Felicia was asleep on the third floor. Miraculously, she was able to wake up and call out to our daughter that she didn’t feel good, and our daughter saw Felicia slump over.  I was on the second floor, and our daughter, Coco, screamed down to tell me that Felicia was on the floor, unconscious. She had an incident two weeks before the SCA, and Coco said it was happening again. I ran upstairs and she was on the floor, unconscious and gurgling, and I started CPR, chest compressions, and mouth-to-mouth. She wasn’t coming to, so I screamed for her dad to come up, and we were both doing CPR while Coco called 911 and talked to the paramedics. They came and took her in an ambulance. She came to at the hospital.

How has the SCA affected your life?

Felicia:

It’s definitely made me so grateful for every second of life, and I started to look at life differently afterwards. It was scary, but I had to overcome that and keep going. I’m so grateful to God, Coco, John, my parents, the EMS workers, and the doctors who put in my ICD. My ICD saved me again two times a few summers ago, and I feel like I’m in really good hands. ICDs and medicine can do so much for people living with heart conditions. You can live a full, happy life after a cardiac event.

I think it’s so important for schools and businesses to learn CPR and have AEDs and trainings. John learned CPR at work, and had just had a refresher a month before my SCA. The EMS workers said he did a great job. Doing something – compressions, early defibrillation, and calling 911 – can really help your chances of survival. Even though it seems scary, it’s worth it to take CPR classes and get an AED.

John:

Immediately after the event, Felicia was in the hospital. For the first 24 hours I was there with her, her memory was not good – she’d ask questions and I’d answer, and then she’d ask again right away. I thought I had performed CPR wrong and was really upset – I thought she might have brain damage. Thank God her memory came back – it was a miracle.

You could save a life by learning CPR –  an SCA could happen at any time.

Jill Collinson

Can you tell me a little bit about your family’s SADS journey?

We had no family history – this came out of the blue. Jake started having events at 7. The first one he had was when he was dropped off at a skating rink for a birthday party, and we got a phone call that he’d had a head injury. They did scans and cleared him at the hospital. He then had two events shortly after – one riding his bike, and one running up the stairs after recess during Bible School. That’s when they did more extensive medical testing, and gave him a diagnosis of seizure disorder.

He had several events over the years – in the swimming pool, on the soccer field, while running laps in PE, while playing games at a church event – and I spent all those years studying seizures, going to symposiums, and educating myself. It bothered me that there were aspects that didn’t quite fit the definition of seizure disorder, like how long the episodes were, or that they always happened after physical activity. We talked with his neurologist, who said it was a coincidence – but I thought it was a pattern.

Our breakthrough happened when Jake was 20 years old, working at a theater, and had a “seizure” in the lobby. An off-duty police officer – Richard Salgado from the Hillsborough County Sheriff’s Office in Tampa – found him lying face down and began CPR. The fact that a stranger found him made all the difference – we would have thought it was a seizure, but the officer through it was his heart. He was taken to St. Joseph’s Hospital in Tampa and intubated, and we were told he’d been found in Sudden Cardiac Arrest.

They asked if we could implant an ICD in him, and as we read through the paperwork we saw he wouldn’t be able to have MRIs, and because we thought he had seizure disorder, we didn’t want that. The doctor on call said that if it happened again, and he didn’t have a device, he wouldn’t have a brain to worry about. We consented and the ICD was implanted.

He had an event soon after, and came to right away because the ICD fired. They did a download of the data and told us they suspected it was either LQTS or CPVT. Genetic testing eventually confirmed that it was CPVT. They put him on medications and checked the rest of the family. My husband and I don’t have it – he’s de novo.

His cardiologist, Dr. James Irwin of BayCare Medical Group, said it was his opinion that Jake never had a seizure – and we were shocked. We’d been in treatment for 14 years. I was upset – I asked how that could have happened. The cardiologist said he just wasn’t examined at the right moment. Now he leads a normal life and has learned to live with CPVT.

Jacob Collinson

Can you tell me a little bit about your family’s SADS journey?

I was diagnosed with epilepsy for a long time, which is clearly not what I had. Strobe lights didn’t affect me, and tests never really showed anything. It was a bit of a journey to diagnosis, and it took a while to find the right medications and everything. We originally thought it was LQTS and I was on different meds while we were waiting for our DNA results – it was rough. I would irritate paramedics when I was having events, because I wouldn’t want to go to the hospital – because my heartbeat would be stable and my arrhythmias would disappear.

Now I work in IT – general support, and I’m about to move into security. I don’t play sports like I’m used to. Some days aren’t as good as others, but overall, I’m doing fine.

Can you tell me a little bit about your CPR save?

It’s one of those things that happens in the career of a paramedic and that will stick with you for life. I’ve seen a lot and I’ve done a lot, but responding to Gregory’s house is something that has stuck not only with me, but with the entire team.

There is no one individual that saved a life that day. It really truly is a team effort. It started with Greg’s parents, who were scared to death of what was taking place and having a lifeless young body in their house. I was fortunate that day to work with my partner Nick, and volunteer ambulance corps, as well as our police department dispatchers. All of us were very experienced and well-versed in what needed to be done.

As soon as we walked into the house, it was very apparent that we were in a critical situation. A young boy was lifeless on the floor. We immediately started high-quality CPR, with ventilation and chest compressions. We looked at his cardiac status, used defibrillation as needed – as well as intubation and ventilation. We’re on the time clock as soon as someone goes into SCA. There’s only minutes before hypoxic brain injury occurs. He was down probably a good eight to ten minutes. So we knew we were on the cusp of working to bring someone back from the dead. We were able to bring his pulse back within 10 minutes, and got him to the hospital for the support he needed so he could live a full life.

Often, paramedics leave patients behind after saving them. But I had such an immediate connection to the family, so I stayed in touch with his mom and dad, and I’ve worked with Gregory as a mentor as he’s progressed to his medical career. I consider him almost like a little brother. We all feel very fortunate that we were able to be a part of something that worked out so tremendously well.

How has this event impacted your life afterward?

I’m a father of five kids. I think events like this make us more aware that we need to love our children, we need to cherish them. And we need to find moments in time that we hug and hold them, and not always chase the next dream, the next sporting event, the next whatever. It’s really important to learn to slow down and appreciate the little things in life.

I feel so fortunate to have gone to Greg’s wedding and watched him grow up, and that gives you validation as a paramedic and medical clinician – the skills that I have, that I can bring to bear on another person’s life, are really validated by watching this kid stand at the altar, get married, become a registered nurse and pursue his dreams.

What do you want others to know about Sudden Cardiac Arrest?

The unfortunate thing is that people often don’t find out about these conditions until somebody goes into cardiac arrest. So first and foremost, I feel like every new parent should learn how to do CPR. Because at the end of the day, if somebody goes into cardiac arrest – which we cannot control – at least we can respond properly.

     Today all the police in our area have AEDs on their vehicles.  I always encourage people to learn CPR, and with a grant I applied for and received,  we teach all students in our school district over various grades and years about Long QT, heart arrhythmias, and they all learn CPR.

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. 

The first time I had my cardiac arrest was February 13^th, 2016.   My cardiac arrest occurred when I was at baseball practice and I told my coach I did not feel right and was having a lot of pain.  I thought it was just muscle pain, but I ignored it and a few minutes later it came back.  My coach told me to sit down for a few minutes.  Then it was my turn to play baseball.   Then, all of a sudden, I collapsed on the baseball field and suffered a cardiac arrest. 

Because of the life-saving measures of my coach who did CPR on me and 911 emergency services, I survived!   My heart had stopped beating and I had no pulse.  They performed CPR on me until the ambulance came.  I was air lifted to the Children’s Hospital, Lucile Packard at Palo Alto Stanford.  I was in the intensive care unit for two months straight fighting for my life!  

Thanks to my coaches, I am alive today.   I had symptoms on the same day of the game and my cardiac arrest, but no symptoms the day before.   When I woke up, I was in the hospital.  Now, I see my cardiologist every two months for follow-up. 

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. 

Name: Ayden

Age: 13

Diagnosis: Long QT type 1; diagnosed at age 12

I was really sick and dehydrated my mom took me to the doctor and they sent me to the ER to get IV fluids. The doctor did an ECG to see if she could give me some medicine to stop puking and noticed an abnormal ECG. Then she referred us to a cardiologist.

I played a lot of sports – I wrestled on a traveling team since I was 5, played baseball, and football. When I saw the cardiologist he did another ECG and it had a prolonged QT interval also and he took me out of sports until we had some more answers. I have an EP now who is awesome! He started me and my sisters (we found out they have LQTS also after genetic tests) on beta blockers. We live in the middle of nowhere so after he was able to help get us AED’s he approved us to do sports while we take betas.

The only thing I really can’t do anymore is swim alone.

The hardest thing about being diagnosed, is that I have always wanted to follow in my dad’s footsteps and join the Army. I want to go to WestPoint and serve in the Army as an officer in the medical field, I still have to talk to a recruiter, but it will be really hard if not impossible to join with LQTS. My dad thinks I can go to school as a civilian and still help. It’s also hard when kids don’t understand my condition, I even had a coach who wouldn’t let me participate in certain things when I had an activity monitor even though the doctor said it was ok.

It helped that my mom and sisters have it too, we can talk about it and the SADS chat group was really cool to get to talk to kids that have the same condition.

I have learned that it’s not something to joke about, I need to take it seriously. Some good things are:   now I am prepared! I take my beta blocker every day and my doctor says that lowers my risk of an episode a lot!

I haven’t been diagnosed for very long, less than a year but I used to take being active and in sports for granted it didn’t seem like a big deal to be involved. After I lost sports for 6 months while we did tests, I missed them a lot. Now I give 100% every practice and event because I am so happy to be able to do them again.

One of my closest friends wanted me to stay for a sleep over and my mom was a little worried, my friend’s mom got CPR certified and showed me her certification and told me that she was trained if anything happened so I didn’t worry.

Sometimes I forget to take my beta blockers, it makes me really nervous!  Now I remind myself every night before bed to remember and take them.

My advice to a newly diagnosed child or teen is to not listen to negative people. Thank your friends and family for supporting you.

(MOM) The encouragement I would give to other parents who have children recently diagnosed would be to join a group, there is so much support and understanding. The people in the groups can be so supportive, even if it’s just to listen to you vent. One piece of advice would be to write your questions down to ask your doctors and to not be afraid to ask them. We are really fortunate to have an amazing EP who takes as much time as it takes at our appointments for me to feel comfortable that my questions have been answered and I understand what our health plans for the kids are.

Quality of life

Physical quality of life:  8

Emotional quality of life:  10

Overall quality of life:  9

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.