Did my son inherit my CHD?

[TXGal]

Hello,

I'm new to the boards and have had an ASD repair and Mitral Valve Replacement. Last year after my son was born I had an echo done to make sure his heart was ok. They found what they thought was a bicuspid aortic valve, but wanted to wait a year to take another look when he was a little older to confirm. I found out yesterday that he does in fact have a bicuspid aortic valve. We don't have an appointment to talk to the pedi cardiologist until March 4th. I was curious, they are 2 completely different defects, but what do y'all think? Was his CHD inherited or just a coincidence?

 

[Mary]

Hello,

I'm new to the boards and have had an ASD repair and Mitral Valve Replacement. Last year after my son was born I had an echo done to make sure his heart was ok. They found what they thought was a bicuspid aortic valve, but wanted to wait a year to take another look when he was a little older to confirm. I found out yesterday that he does in fact have a bicuspid aortic valve. We don't have an appointment to talk to the pedi cardiologist until March 4th. I was curious, they are 2 completely different defects, but what do y'all think? Was his CHD inherited or just a coincidence?

You might have to look further than your mitral valve for a connection. What about other members of your family and your husband's family? Do any of them have bavs or anuerysms? It might skip several generations.

If there is no other connection, then I would guess that it's a coincidence, but I'm no expert.

In the meantime, welcome to VR!

 

[dick0236]

but what do y'all think? Was his CHD inherited or just a coincidence?

The docs are the only ones who "might"be able to answer your question whether it could be genetic. Genetic or coincidence, it is certainly not your fault. It is what it is.

 

[DebbyA]

I hope you'll report back what you find out March 4, both about the genetic aspect and your son's specific situation. My guess is that the cardiologist would have to depend on your evidence on whether you have other bicuspid family members.
It may not be a factor in his life until at least age 50-60.

 

[Lynlw]

My guess is you won't ever know, at least right now there isn't a gene or something that shows it. BUt I believe 2% of the pop have BAV. As for your CHDs. Justin was born with several CHD,the main one TGA (my sig list them) MY Grand mom had and ASD and my SIL's baby died in utero with TGA when she was 8 months pregnant. NOW to make Justin even luckier My Husband's Brother died at the age of 12 following heart surgery in the early 50s at CHOP for CHD (noone knows which ones) the surgery was a "success" but his legs weren't used to having much blood flow thru them and after surgery his legs veins and arteries were basically dry rotted and burst with blood going thru them and he died a pretty awful death. Then Justin was born and since then Don has an 8 year old neice with TOF (2 surgeries doing fine) and a 1 year old nephew with some right side problems that had surgery at CHOP last year a month after Justin. Anyway CHOP genestics were quite thrilled when ALL of both sides of our family (living grandparents, aunts uncles cousins of Justin) agreed to give blood (or swabs for the little kids) to see if they could discover a genes causing all the CHDs (Justin asked if he could name it ) but so far they haven't found anything in our blood. There ARE some CHDs that they have discovered like the 22 deletion http://en.wikipedia.org/wiki/22q11.2_deletion_syndrome and SOME are genetic, but not necessarily hereditary.

 

[TXGal]

Thanks for the responses.. (lynlw), I just read your post.. that's interesting that your family gave blood to geneticists...
I was talking to my mom about the guilt I'm feeling and she said I sound like her when she found out about my heart when I was 18. She said the first thing she felt was guilt, why this happened to her child, was it inherited, etc. I realize that it's not an answer that will help him in any way, but I can't help but wonder.. if I had another child, what would be the probability, etc.. I know that hospitals such as Scott & White have geneticists that can test to see if you have a certain gene that can be passed and could give me more answers. I think I may do that one day.. just because I'm curious. I know I have a great aunt that died of a heart complication in her 30s, but back then they didn't have the technology they have these days.

 

[Lisa in Katy]

BAV certainly isn't the worst thing somebody could pass to their child, as it's highly curable, and I'm not sure it's worth the cost of genetic testing, unless like Lyn, it's more than just this one thing.

All moms have guilt about something. I think that's part of being a mom. You'll have plenty more opportunities to feel guilty as your baby grows older!!!

 

[Lynlw]

BAV certainly isn't the worst thing somebody could pass to their child, as it's highly curable, and I'm not sure it's worth the cost of genetic testing, unless like Lyn, it's more than just this one thing.

All moms have guilt about something. I think that's part of being a mom. You'll have plenty more opportunities to feel guilty as your baby grows older!!!

I agree with Lisa, I should have added since all our testing was for research, there was no cost to us.
I also agree about the Mom guilt. Lyn

 

[Philip B]

Where our congenital heart disease comes from is a good question. As I was facing OHS in March 07, I asked the why me question several times. I'm the only one in my family who was "blessed" with CHD, but I'm also the only one who is totally color blind too. These issues came from somewhere, but who knows where?

In December 08, I received a large box of geneology research stuff from my father. I've never had much interest in researching family history stuff, but as I looked at the information which traced my father's side of the family back to its origins in England and Scotland, I did wonder if any of my long lost relatives had congential heart valve issues. Odds are pretty good that someone did, but there was nothing in the reseach material to give me any clear clues.

It's probably normal to wonder where our CHD comes from, but it's probably not worth worrying about too much. Besides it's a lot easier to simply blame our mothers...

In all seriousness, regardless of where it comes from, we should probably simply be thankful that we live in a time where the technology exists to fix CHD problems fairly easily with high success rates.

-Philip

 

[gijanet]

Don't go there...............

Don't go there...............

Trust me! It's not a place you want to visit............I spent many sleepless nights wondering what I had done to cause Katie's defects........was it going to the M-16 range when I was five months pregnant (and, of course, it wasn't, as the heart begins forming around the 4th week of pregnancy)...........was it the stress from going to graduate school, teaching full time and serving in the National Guard all at the same time....................was it the antibiotics I took for a sinus infection before I even knew I was pregnant.......................and the what if's..........................just don't go there! It's not worth it and you won't get anything resolved.

This question/issue comes up very frequently on the CHD lists. There are some families (in the minority) that have more than one child with a congenital heart defect, but they are definitely in the minority. Lyn could probably quote you the latest stats on the percentage of having another child with a CHD if you already have one. I have to confess I didn't pay much attention as I do not plan on having any more children..................course I said that after my son was born.................... haha! He is heart healthy, by the way................just brain damaged as all teenagers are............ Anyway, it's a small percentage and stats are just that..............just stats. We learned to disregard those a long time ago. If I had paid attention to stats quoted to us our first year into the CHD game, we would have buried Katie three years ago. I don't think she'd appreciate being buried alive!!! She's living proof that stats don't mean diddly squat! I wish with all MY heart that Katie did not have the heart anomalies that she has, but if I had to choose between not having her and having her with all of her heart defects, I would choose to have her. She is a joy. She is very active and full of life and thoroughly enjoys life, despite all that she has been through.
Do not let the fear of having another child with a BAV keep you from having another child should you truly desire one.

Abort the guilt trip right now. Hope you have travel insurance. Hugs. J.

 

[Curtsmum]

Sorry i can't answer your questions, just wanted to say welcome. Hope the doctors can give you some answers and wish you all the best with your sons condition. 4th of march was our sons check-up date but they have just changed it to the 19th. Let us know how you get on. Tc