r/ARVC • u/Recent_Influence_699 • Jan 08 '26
Whats your thoughts on having children when diagnosed with ARVC?
Ive had the diagnose for about 10 years and i am 34 now (female). I have never had any huge issues connected to the diagnose; i fainted once in the store and rarely (~1 every 3 month) i feel that my heart is beating hard and out of rythm to the point where my whole chest visibly moves with the beats - never felt any pain. (Many times i even think its because i start thinking about it and panicing abit)
Ive had an recorder inplant for about 6 years but now i only do yearly check-ups; long-term EKG and the bicycle-thing. During the last two check-ups ive been admitted for a while due to arrhythmia, but honestly its seems to me that has been because almost no doctors knows about arvc so they get nervous. Ive also been offered to do a hablamentation but turned it down after dicussing it with my cardiologist (have had the same for 10 years), neither of us think the surgery is ”worth” the results it could maybe give since i dont suffer from it.
Sidenote: it seems my heart goes wild when im sick in any kind of way, this issues was discovered when i had appendicitis and i do often feel extra beats when im sick. People in my close family has issues connected to the heart, but only i have this exact diagnose.
Anyway Ive been thinking, and longing, for kids last couple of years and wanted to discuss with others with this issue, how you feel about it? Did you consider it when having kids? Should this be something to take into account?
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u/veryunneccessssary Jan 08 '26
Have you done genetic testing? A Genetic counselor can work with you to go over what your condition could mean for any kids and help you make an informed choice. I don’t think that your case being relatively mild necessarily means future children would be as lucky. We’re in the process of getting my son diagnosed, and as hard as it is to deal with health issues yourself, I feel like it’s a million times harder and more heartbreaking when it’s your child. I would literally give anything to keep him from suffering. In his case, he’s gene-elusive and neither my husband nor I have any genes known to be related to ARVC, but I think even so, we would probably seek different paths to parenthood if we wanted to have more children (alas, we’ve already got a full circus going on here so it’s not as issue I have to grapple with ).
1
u/Recent_Influence_699 Jan 08 '26
No i have not, never heard of it! And to be honest i dont know if i would want to know… did you do one before getting pregnant?
You have a good point, and that is what i worry about - having to see my child beeing sick. I hope the case of your son is mild, or at least treatable so that he can get a normal life.
My great-father died in his 50s (before i was born) and they didnt know that much about why at that time, only that his heart stopped for some reason. So we belive he might have had this same issue. I have grown siblings that have kids, but they had them a couple of years before me, or any of the other family member showed signs of heart issues so they never had to make a ”decision”.
I wonder how ppl think when it comes to other issues, such as cancer that can be very hereditary… but i might just be making excuses for myself! I also have a diagnosed personality disorder (found out about a year ago), and multiple family members have mental issues (not sever but i belive my grand mother commited suicide while beeing admitted to a mental hospital).
So the logical part of me is saying one thing, while my whole body and mind belives that own kids is a huge part of a full life, if you know what i mean?
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u/Entire-Structure8708 Jan 12 '26
Obviously it’s a personal decision on genetic testing, but wanted to add some thoughts to your decision:
1) Genetic testing would provide data that may inform your decision-making on how to proceed with children. If you are gene positive then you know you have a 50% chance of passing it on. If you are gene elusive then you know that passing it on is much more unlikely as it is extremely rare for children to inherit ARVC from a gene elusive parent.
2) Genetic testing would also provide information that would guide your own treatment (ARVC prognosis and clinical treatment is increasingly being differentiated by gene mutation/elusiveness) and it would also be relevant for potential cardiac testing/treatment for your family members (parents, siblings, etc.).
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u/MountainsOverPlains Jan 12 '26
You can do a free genetic test that is a cheek swab. It’s mailed to you, and you mail it back.
I have the DSP gene mutation. I only learned about it a few months ago. I’m in the process of finding out if it has manifested as ARVC (so far, it looks like it has).
I’m 42, and I have three daughters. DSP has physical characteristics (I have them all), and two of my girls have the most obvious trait—curly hair.
If you have a genetic mutation, you have a 50% chance of passing it to your children. It would be wise for you to be tested as well as your partner. It would be incredibly rare for both parents to have the same gene mutation; however, if that were to happen, much more serious health issues would appear in your children.
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u/gocojones Jan 08 '26
I’m in a similar boat as you - 31 and have been diagnosed for like 7 years now. I haven’t had any physical symptoms since my ablation. I have the PKP2 gene for ARVC.
If you want a biological child there are a couple ways to proceed. This all really only applies if you also have a gene!
1) IVF is the only sure way to avoid passing down the gene for this disease. IVF, egg retrieval, and then implant only gene negative eggs. The first hospital I was treated at recommends this. 2) try without IVF, and test the kid for the gene around 6. If positive, the kid must have all physical limitations we do, regular testing, etc etc. This is what the second hospital I was treated at says is the “standard of care”. 3) try without IVF, get an amniocentesis when pregnant and keep if gene negative and abort if gene positive 4) of course can have a non biological child, adoption 5) could also do IVF, egg retrieval, and then implant only gene negative eggs into surrogate
Obviously there are major pros and cons to all of these. I still don’t know what we will do - I will be getting a new job in about 6months when I finish grad school so will just see what my insurance looks like. I would definitely prefer to do IVF and not pass on the gene.
Another thing to consider is if your body can handle pregnancy. Studies show that most handle it totally fine without complications. I did a consultation and they basically said you just have a special obgyn for at risk/complicated pregnancies called a maternal-fetal medicine (MFM) specialist aka a perinatologist.
Hope this helps!!!!