Can you tell me a little bit about your family’s SADS journey – from diagnosis to where you are now?
Our journey is about my son, Logan. He passed away a little over three years ago on October 31, 2019.
Logan had just turned 19 and was off at college. He was with his sister, Lexi, getting ready to go to a Halloween event. He was laying on my daughter’s bed and walked into her kitchen where my daughter was doing her makeup. Logan walked into the kitchen appearing fine – he wasn’t gasping or holding his heart – and he immediately stated, “I have to sit down.” Lexi could tell he was kind of getting ready to fall. So she reached out and caught him and he went unresponsive. So she lowered him to the floor. She actually thought he was pulling a prank on her. That’s just how they were. But she ended up calling 911 pretty quickly and initiated CPR. She had fortunately been trained while being a camp counselor.
The EMTs got there pretty quickly. And this is where it gets tough because they assumed it was a drug overdose. Just because of the situation of a college student, and a young, healthy male. So they immediately gave him Narcan, I think it was two doses, and nothing happened.
This is when the reports get confusing, because I didn’t see anything about a heartbeat, or pulse. But they did start CPR pretty extensively, more Narcan was given, and a dose of epinephrine.
They worked on him for about 40 minutes, and took him to the closest hospital about 3-4 minutes away. But when they arrived at the hospital, the ER staff tried a couple more things, more Narcan and a couple of electrolytes and sodium bicarbonate. They continued with more CPR and just couldn’t revive him. So he died in the ER.
It was just so traumatic because my daughter called me and said,” Mom, Logan collapsed,” and I almost instinctively asked if he had a heartbeat. She didn’t know anything at the time and had been kept out of the room.
I was like a zombie. I had to drive an hour to get to the hospital. I just remember thinking, why didn’t they use an AED and just revive him? But he was in asystole when he arrived at the hospital. I was just so incredibly sad and distraught. Feelings of denial and anger.
And so we went through testing, and actually had his DNA sent to a children’s hospital in Chicago. They were doing some type of genetic cardiac testing. And they really found nothing either, along with the medical examiner in Milwaukee. They all thought it would show an overdose. Then his autopsy and toxicology came back clean.
His death was undetermined. And they never really had an answer for our family. I had so many questions. Logan’s cause of death was determined to be of unknown etiology and we don’t have a reason as to why he collapsed and died. So that’s been the hard part. It’s been a hard journey. But you just learn to just carry the grief as you go along. It’s helpful to do things like this interview. I just want to get Logan’s story out there.
The unknown has been the hardest. How does this perfectly healthy young man all of a sudden collapse? And then can’t be saved? To me it was just incredible.
Shortly after Logan died, a young man about my son’s age passed away unexpectedly as well. The medical examiner sent his DNA to the same research study, because they couldn’t find a cause of death either. I just thought it was uncanny that there were two similar patients passing and I remember the medical examiner saying, “well, if it’s a cardiac issue, that’s very rare.” And that’s what I thought. But the more I shared my story, there were people all over the United States with their own stories regarding how their seemingly healthy young children were dying from sudden cardiac arrest.
I do want to add that at the time, Logan wasn’t involved in sports in college, but Logan played hockey for two years and ran cross country, played a little bit of football, baseball, and he was pretty athletic, up through high school. He never reported any issues. I do have to add that my son used to tell me that his heart would race. He had an EKG when he was 14 at his wellness check and they’re like – Oh, it’s fine. If you have symptoms again, let us know. So by the time he was getting ready to go off to college it was time for another wellness check. I urged him to please talk to his doctor, again, about this racing heart.
But when I pulled all his medical records after he died, he never mentioned it to his doctor. So there’s always that could have, would have, should have, that was really hard for me to get over. I thought maybe it was dehydration or stress. You always think it’s something else, or at least I did.
I don’t know what caused his arrhythmia but I know he would feel it. I talked to his friends after he passed away and they told me he had a heart rate monitor on his phone.
If you could give advice to someone who has just gone through what you have gone through, what advice would you like to give?
For me, I didn’t handle my grief really well, I kind of used intellectualization as a coping method. I found out everything I could because I work in healthcare. For parents, I’d recommend educating yourself. And I think it was SADS that I reached out to ask about genetic testing for my daughter and I think that’s always important. Even though it didn’t show anything, it just let me feel like I had that little ounce of control. You know, because you don’t feel you have any control after your child dies.
Other ways I handled my grief was putting on a cardiac screening at my son’s former high school. We partnered up with the school and Who We Play For and offered reduced fee EKG screenings. So it just gave me a place for my grief. And again, heaven forbid other families had to go through this, but if I had that opportunity for an EKG offered by the school when Logan was here, who knows?
There’s so many ways to keep Logan’s light shining and to educate the public. There’s a lot of education and people say it’s rare, but I have spoken to so many parents who’ve experienced sudden cardiac arrest with their kids. Not only athletes, but young people, just like my son, who collapsed and died. It’s not acceptable. This is not okay.