One of the hardest things for me to do was tell my kids about my atrial fibrillation. My daughter is 10 years old and my son is going to be 8 soon. I’ve had afib for almost 9 years and my kids just found out about my condition a few months ago. They had no idea I was battling the beast.
When they were young it was easy to keep it a secret because I was only having an episode about once a year. They were also too young that even if I would have told them they wouldn’t have understood. It was easy to keep it to myself. As they got older and my afib progressed, however, it got harder and harder to keep it a secret. The burden of it was taking its toll on me mentally so I knew it was time to tell them.
I didn’t know how to do it so I procrastinated for several weeks. I didn’t want to worry them needlessly. How do you tell your kids you have a heart condition without freaking them out? I had no idea how I was going to break the news to them but what I did know was that it was important I do it in a very informal and “fun” setting. I chose our regular morning breakfasts before school.
I work from home so I have the fortunate opportunity to spend time with my kids in the morning before they go to school. My wife goes to work very early – usually before the rest of us get up in the morning – so breakfasts are just me and the kids. As you can imagine, our breakfasts are very informal and light-hearted. We’re not solving the world’s problems as we’re eating bagels and drinking O.J.
One morning we were having breakfast and I just threw it out there out of the blue. I didn’t make a big deal about it. I said, “Kids, I have something to tell you. Dad has this thing called afib. It basically makes my heart beat really fast sometimes. When that happens I get tired and can’t do much so if I ever tell you I’m in tired because I’m in afib, you’ll understand why.”
That’s all I said. I was expecting my kids to look concerned and ask me lots of questions. Instead, they barely skipped a beat (no pun intended)! They just kept on munching on their bagels. On one hand I was relieved but on the other hand I was a little disappointed. Don’t my kids love me…lol? Where are all the tears and concerns over dad? What am I, chopped liver?
My daughter, always being the inquisitive one, had some questions but nothing serious. She wanted to know how I got it, do I get it a lot, those kind of questions. She wasn’t concerned about me and she wasn’t sad or anything. My son only wanted to know if I was in afib at that moment. They took it in stride and weren’t concerned at all.
I then proceeded to tell them that we were going to Texas in a few months so that I could hopefully get it fixed. The first question they asked was, “Why Texas?” They wanted to know why I couldn’t see a doctor here. I explained to them that the best doctor in the world for treating afib was in Texas so that’s why I had to go there. They thought that made sense.
I told them the doctor was going to fix it by doing a “procedure” on my heart so I would have to spend one night in the hospital. I assured them that wasn’t a big deal. I told them I had to stay the night so they could tell if the fix worked or not. It wasn’t exactly the truth but I wasn’t about to tell them that I had to stay because they had to observe me to make sure I was going to be o.k. Surprisingly, they didn’t ask any follow up questions and they didn’t look freaked out at all so I left it at that.
That was about the extent of the conversation. Here I had been worrying for so long keeping this secret to myself. If I had known it was going to be that easy I would have said something a long time ago! What a needless burden I carried with me. It was a relief to get that off my shoulders. It was also a relief that I didn’t have to keep the ablation a secret either. I could talk freely about my condition and the upcoming ablation (although I don’t make it a practice anyway to talk about either in the presence of my kids).
Fast forward to today. My wife told me that our daughter asked her privately if I was going to be o.k. She was apparently worried about me with the ablation being right around the corner. I didn’t want her to worry about me so I thought I would bring it up asap – again in a light and conversational way. I thought in the car while running errands would be the perfect setting to bring up the topic.
We’re in the car and I asked my kids if they were worried about me and my impending “heart procedure” as we’ve been calling it. They both said they had no worries. Thanks kids…I love you too…lol! In all seriousness, I was glad to hear they weren’t worried about me. I didn’t need that stress just days before my ablation. I don’t need anyone worrying about me.
What was interesting is that they had all kinds of questions about afib and the heart procedure. How do you explain a catheter ablation to kids without freaking them out? I was tempted to tell them, in the simplest terms possible, what exactly an ablation is but we were going to be at our destination soon so I thought I would keep my answer short and simple and somewhat humorous. I told them that the doctor was basically going to tattoo my heart. They thought that was funny and my son wanted to know what kind of tattoo I was getting. I told him a few circles. He thought that was lame.
My daughter wanted to know what afib was exactly and what the success rate was of this ablation. She asked that because she had heard me talking to my wife about the success rates and that they weren’t very high after just one procedure. I demonstrated with my hand how a normal heart beats and then what happens when I go into afib…that my heart basically quivers. I made a quivering gesture with my hands. I knew they were getting it because my daughter immediately said, “So when you’re in afib your heart doesn’t do a full beat..it kind of shakes.” My daughter is smart. All my son wanted to know was if my whole body shook when I was in afib. It was too funny.
When I told them that the success rate wasn’t the greatest but still not horrible, my son asked, in the most serious way possible, “What happens if it doesn’t work? Do you get your money back?” I laughed so hard I almost drove my car off the road. When I told him no he thought that was a rip off. He said you should get your money back if it doesn’t work.
You have to love how children’s minds work. But he brings up a great point – I should get my money back if it doesn’t work, or at least a discount on the next one, right?
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Travis: Good subject. I’m in afib all the time. Completely asymptomatic. Play full court basketball, baseball, soccer, 5 miles a day, lift weights… So for my kids it is only a word, afib. They DO know stroke risk goes up. My mother-in-law has afib and had a stroke in her 70s. She is ok. My brother-in-law (her son) has afib. My kids asked if it is hereditary. With lack of data, I said “rarely”. My kids run track and cross country. My daughter made it to the regionals for the 100 meter dash (last year at 13) and my son made it to the Junior Olympics (AAU Nationals) for the 100, 800, and 1500 meters (at age 12 last year). We had the kids get EKGs and we have portable machines at home. My daughter is a worrier and asks questions from time to time. My son has the ultra athlete heart rate (less than 60) and my daughter has a slightly high heart rate 80s. She complains about flutters and worries about her heart. We are keeping an eye on both of them.
I ran on teams. But I believe my afib came from running too far, too fast, too long. If I had slowed down at 62, I think I wouldn’t have had a problem… at least not this early. I also have treated mild sleep apnea. So we figure we have lots of time with them. When I was their age, I never had to think about this stuff. When I got older, I thought doctors could tell if you had any kind of a heart problem with just a stethoscope and some blood tests. You either had blocked arteries or you didn’t. Simple. I never dreamed there was such a thing as a heart rhythm problem for the athletic and healthy. Knowing this stuff exists, even if you don’t have an arrhythmia, is anxiety producing… particularly for kids. My wife was an avid runner who ran half marathons. She decided to cut back given the high incidence of afib among endurance athletes and given her family history.
So afib affects everyone around the person(s) with afib. Good luck with your ablation. As an aside, I took my family to San Antonio (we are from New Jersey) and when we got there, everything looked pretty much like New Jersey, so my son, who was really young at the time, asked “Where’s the cowboys?” The only answer I could come up with was “I think they’re in Dallas”. -Pete
Thanks for stopping by! Sounds like you have some pretty athletic and talented kids. That’s awesome!
Unfortunately, there actually is a very strong genetic connection with atrial fibrillation. Like you said, I don’t know that there is a lot of data but a few EPs I’ve talked to said there is a connection and I just see it all the time in the emails and comments I get on this website. My father has afib. His aunt had it too. It definitely runs in our family. I often wonder if my younger brother will get it someday.
My daughter has asked from time-to-time if she’ll get afib. She doesn’t ask in a scared or worried way. She’s just curious. I just shoot straight with her. I tell her that there is a possible genetic connection but that she doesn’t have to worry about it for many years. I also tell her that they’ll hopefully have a cure by the time she even has to think about it. She’s been cool with that answer.
The good news is it’s not likely that our kids will come down with this crap when they’re young – if they get it at all. Of course I say that but I shouldn’t talk as I got it in my early 30s!
I used to run really hard too (in my 20s) so I’m sure that didn’t help – and I was also a very heavy drinker and had a train wreck of a diet. I think if I wouldn’t have worked out so hard and had a healthy lifestyle I could have post poned the inevitable until at least my 50s but I don’t think I could have avoided it because of the genetic connection with my family. I think I was screwed no matter what.
Are you on any daily meds? Do you have any plans to stop the afib (i.e. ablation)? You’re somewhat fortunate. When I have afib, it basically knocks me on my ass. I can’t do anything. My dad is like you. He’s been in persistent afib for several years and he doesn’t even notice it.
Good line about the cowboys being in Jersey. I have relatives in San Antonio but I haven’t been there in years.
Take care and I hope your kids are able to live a life free of afib!!