Brian was a junior and on the dean’s honor list at the University of Wisconsin-Madison, studying biomedical engineering and computer science. He truly loved his college experience and formed an amazing second family away from home. We are comforted knowing he was the happiest he’d ever been especially after recently landing an internship as a biomedical engineering intern at Medtronic in the cardiac rhythm and heart failure division of all places.

Just a normal day in the life of a college student during exam week, Brian was in his apartment all day studying on and off for a test. He had been complaining of what he thought was an abscessed tooth for a day and a half. He still had one more final exam, but it became very painful. He called home complaining it was getting worse which was unusual for Brian.

I called his doctor to get him an antibiotic to help until he got home. They rightfully refused as he was too far away to be evaluated. I then urged Brian to go to the immediate care, but he thought it could wait. I also urged him to call his doctor which he did as we noticed that they were his last three phone calls.

Brian’s roommate was studying in the next room and after we contacted him, he went to check on Brian and found him sitting up in his chair, already gone. It had been a couple hours since he was last seen acting normally. We were told nothing was found wrong with the tooth or with Brian. We now suspect it was a sudden cardiac arrest.

Brian’s goal was to find a career “ to improve the quality of life for others”. He always listened to others and made them feel like they mattered. We miss him so much and think about him every day. Brian was brilliant, humble, and kind. He made a great impact on many lives. It’s still hard to believe he’s not going to walk through the door from school with a big smile on his face, dragging in his pile of dirty laundry. He always ended the day saying or texting  “I love you”. The summer before his death, we had secretly recorded Brian playing Pearl Jam’s “Just Breathe” on the guitar – it has become our motto for moving forward.

We are so grateful for the help we received from the SADS Foundation. They were here for us to guide us on our journey. They were our lifeline, helping us navigate next steps for evaluating Brian’s younger brother. They continue to support us through informative e-newsletters, educational family webinars, and the virtual family conference where we connect with world experts and other SADS families. We ask that in memory of Brian, you please take a moment to donate to the SADS Foundation.

“As with many Sudden Cardiac Arrests, I didn’t have any symptoms – it happened out of nowhere.”

Elisheva’s Sudden Cardiac Arrest came without warning. She had been a runner for many years, and was in great shape – she’d just had a physical a few months before her SCA. She went to catch an early flight at an airport in Boston, and the last thing she remembers was an attendant scanning her ticket, and walking down the connector to the plane. She woke up in the hospital with a ventilator in her mouth.

After her SCA, Elisheva went through lots of testing – including genetic testing – and learned that she has several arrhythmias, which are unidentifiable. She had an ICD put in – which she says is a constant reminder of how her life has changed.

“Gratefulness and grief aren’t mutually exclusive,” she says, noting that while she is extremely grateful to have survived the SCA, it has led to ongoing health problems in her life. “I have a wonderful group of friends, who are an amazing support group. I don’t know what I’d do without them – they’ve saved my life.”

Elisheva’s mission is to educate those around her on what SCA is, including that SCA is different than a heart attack, and can affect anyone – like children and young, healthy adults. “I’m always trying to get people to understand what SCA is, and that it can affect everyone – even children,” she says. “Once you have an SCA, you hear stories of people suddenly dying, and you know what that moment is.”

Elisheva wants to see AEDs spread throughout local communities to help prevent deaths from SCA. The airport where she had her SCA had eleven AEDs, even though it was small – and had performed another SCA save with an AED just a month before Elisheva’s. She particularly wants to see sports teams carry travel AEDs.

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.

Can you tell me a little bit about your SCA?

It was Sunday morning when it happened, and I was in church. Prior to that, we had no awareness that there was something wrong with my heart. I had quit basketball a few months before, because I kept almost passing out during sprints – I’d be running the last piece and everything would go black and I’d have to catch my breath. I thought I was just out of shape.

This was three months later, and at the time, as a teenager, I wasn’t really into church. I was messing around, nudging my mom with my elbow, so when I slumped into her and had an SCA, she thought I was still just messing around. One moment I was there – the next I wasn’t. She saw I had gone grey and wasn’t “there” anymore. She screamed for help and they laid me out on a pew. The pastor did a blessing, and right before they performed CPR, they found a pulse. That’s the first recollection I have – I was off, kind of in space somewhere, and I heard the most faint voice, like if it was two football fields away or something … yelling “I have a pulse! I have a pulse!”

After that, I went to the hospital and spent two weeks going through different tests while they figured out what had happened.

How has your SCA affected your life?

After they diagnosed it, the doctor prescribed beta blockers – and no more sports and working out. Beta blockers didn’t work well for me – I was a young, high-energy athlete and they made me feel sluggish. A few months later, one of three specialists in the country at the time moved to where I lived, and I went to see him. He said I needed an ICD right away.

They were very conservative with my treatment at the time. The device helped a lot, because I didn’t have to worry about episodes so much.

What do you want others to know about SCA?

Because it’s so sudden and random, my one takeaway after getting the device is – better safe than sorry. The ICD gives you peace of mind. If you’re faced with a choice, do what you can to prevent yourself from experiencing SCA. It’s also great to see how many more places have AEDs now – back in the day we really had to advocate to get them in schools. It’s great to know that they’re more accessible to help save a life.

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.

When I was little, we knew something was wrong, but we didn’t know what it was. At eight, I was diagnosed with LQTS. At 10, I had a cardiac arrest jumping over a fence. After that, my mom has been really active helping the community – placing AEDs in schools, grocery stores, and churches. She’s been working with the SADS Foundation, and she loves it – it’s a great way for her to channel her passion to help others.

What was the greatest obstacle to treatment that your family faced?

It did take me a while to be diagnosed, which was unfortunate, because the QT interval can be affected by so many things. Luckily I found out relatively early from my pediatrician.

A lot of people aren’t aware of how many medications affect the QT interval – common medications like Zofran. There are lots of medications to watch out for. We have Credible Meds on our phone and if there’s anything we’re prescribed, we check it against the app. Doctors have attempted to prescribe things to us that are on the list, but luckily we’ve caught it.

What advice would you give to others in the same situation?

Educate yourself – you are your best advocate for yourself and your child. Doctors might not check the list – they’re very busy with other patients; or they may just not be up to date on what causes QT prolongation. It’s always better to be safe than sorry.

How has the SADS Foundation helped your family along their journey?

The SADS Foundation is an amazing source of education, with so many resources. You can find others in similar situations, so you don’t feel so isolated and alone, and they can get you in contact with lots of different doctors that specialize in SADS conditions.

Although I have no memory of this part, I was intubated and placed on a ventilator in the ICU.  My family back in Detroit was contacted and told they needed to travel to Boise to make decisions on my behalf.  My poor family, being so far away and feeling so helpless, were in such a panic. Thankfully, my airline family stepped in to get them out there and sat by my side until they arrived.  Even as a healthy 38 year old, the odds of surviving it all were less than 5%, but I somehow made it through.  I was told I have Long QT Syndrome and that a medication I was given had caused my heart to stop.  Remarkably, I suffered no permanent organ damage and my cognitive abilities were still intact.  Later that week, I had surgery to place an ICD in my chest.

Healing from this was experience was extremely tough.  I was frustrated and in pain and thought it was the worst thing that could have ever happened to me, but looking back a year later, I realize it was really a new beginning. It gave me clarity about what is really important and allowed me to stop caring so much about the rest. I get to be here with my family and my friends and raise my little human (who thankfully does NOT have this condition!) So, I may have a broken heart, but my eyes are forever open, and I’ll always have so much gratitude just for being alive.

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.