Family planning

[LoveMyBraveHeart]

Hello all,

Mathias' condition was deemed congenital (Ascending Aortic Aneurysm, BAV), and I am wondering if anyone has insight into family planning around these genetic issues or has gone through it all and their kids are just fine? I know it really scares us both to think of having a kiddo go through all of this crud, but we have always wanted a family. Is there anything we/I can do to help prevent this from happening to my future children? Should we plan to not have children at all and explore alternatives? Should I consult a genetic counselor? Any advice or experiences would be so helpful. Just talking with you all is so helpful. I'm so grateful to have found this platform.

With our marriage pending (probably less than a year!), I want to start the kids discussion with doctors now and make sure all of our ducks are in a row before we do start trying.

Thank you in advance!
Jill

 

[tom in MO]

I have two kids and first they said nothing about screening, but that's changed. Insurance paid for an echo for both (24 and 30). Came back negative in both cases.

If you adopt, you wouldn't know about the BAV or AAA ahead of time unless there is a murmur so it's just as blind as giving birth.

Don't worry...Be happy

 

[LoveMyBraveHeart]

I have two kids and first they said nothing about screening, but that's changed. Insurance paid for an echo for both (24 and 30). Came back negative in both cases.

If you adopt, you wouldn't know about the BAV or AAA ahead of time unless there is a murmur so it's just as blind as giving birth.

Don't worry...Be happy

Thank you for sharing! It keeps us both on edge, just trying to decide if the risks are low enough for us to feel comfortable. I hope for a situation similar to yours! Negative screenings!

 

[Paleowoman]

My son has never been screened, I've never heard of that being done to children of a BAV parent here in the UK. On the other hand, my son is always asking his GP to check his heart, and GP has heard no mumur. My son is now 30. The murmur from my BAV was first heard when I ws 25, it probably would have been heard before that if any doctor had ever listened to my chest.

I think it would be a shame if you planned not to have children because of the chance they might inherit BAV....just think, if Mathias's parents had done that so that he had never been born then you would never have met him. Think what you would have lost.

Not everyone with BAV goes on to need surgery, and with advancements in surgical techniques it, anyway, gets safer and better. You and Mathias have had a very traumatic experience having re-do surgery only eight months post AVR, and that is most certainly what is influencing your thoughts right now.

But going back to BAV and inheritance - I do not have any forebears who had BAV, or if I did, they died without it causing a problem. And my forebears all died at a very old age

 

[Duffey]

We have five children. All of them had an echo after I was diagnosed, and three of our grandchildren had an echo when they were less than a week old. One son has a BAV. One grandchild, our daughter’s 10 year old son,
has a BAV and an enlarged aorta. He sees a pediatric cardiologist and we were told he may need surgery in his late teens. My advice is similar to Tom’s . . . don’t worry, be happy, maintain really good health insurance.

 

[LoveMyBraveHeart]

I think it would be a shame if you planned not to have children because of the chance they might inherit BAV....just think, if Mathias's parents had done that so that he had never been born then you would never have met him. Think what you would have lost.

This is true! However, it was a teen pregnancy, so no planning or screening about it! But I will be forever grateful for the outcome of Mathias...even if he isn't 100% (yet). I guess going into it knowing there's a possibility and being diligent about informing doctors and having screens done will be good enough. You never know, they could be completely clear of BAV, but have something else entirely. No wonder parents get grey hair so fast. So much to think about, might as well not think about it at all. Thank you!

 

[LoveMyBraveHeart]

We have five children. All of them had an echo after I was diagnosed, and three of our grandchildren had an echo when they were less than a week old. One son has a BAV. One grandchild, our daughter’s 10 year old son,
has a BAV and an enlarged aorta. He sees a pediatric cardiologist and we were told he may need surgery in his late teens. My advice is similar to Tom’s . . . don’t worry, be happy, maintain really good health insurance.

I love your addition of maintaining good health insurance. What a blessing it is. Could not imagine if we didn't have it. Yikes. Thank you!

 

[Paleowoman]

I guess going into it knowing there's a possibility and being diligent about informing doctors and having screens done will be good enough. You never know, they could be completely clear of BAV, but have something else entirely.

Absolutely. My son has autistic spectrum disorder which is another inheritable conditon. It is a lifelong condition that can't be 'fixed', my son will need support and help throughout his life, he suffers daily from problems his condition gives him, whereas BAV either doesn't cause a problem or it can be fixed. I wouldn't wish that my son had never been born even though he has autistic spectrum disorder - he experiences a lot of joy too and is an amzing person. By the same token, I wouldn't wish that I had never been born because I had BAV !

How many of us on this forum who had/have BAV wish we'd never been born because of it ?

 

[LondonAndy]

If you will forgive the brief diversion from this serious topic, seeing the subject line reminded me of a sign allegedly used outside a council's offices where the Family Planning Clinic was located. The sign said

"This entrance is closed for redecoration. For Family Planning, enter from rear." .....​

 

[LoveMyBraveHeart]

If you will forgive the brief diversion from this serious topic, seeing the subject line reminded me of a sign allegedly used outside a council's offices where the Family Planning Clinic was located. The sign said

"This entrance is closed for redecoration. For Family Planning, enter from rear." .....​

thank you for the laugh! It was much needed today.

 

[Protimenow]

You raise a very scary set of issues. With inexpensive genetic testing, it's possible that, in the next few years (if not already), these tests will detect markers for all kinds of genetic disorders. There may even be pre-marriage genetic counseling, warning the pair of possible inheritable disorders. There may be fewer births, because potential parents will fear that their children can inherit all kinds of nasty stuff.

In terms of BAV - I wouldn't fear having children. (Actually, I have two, and as far as I know, neither has this problem). They didn't have kids, so I have no grandchildren with BAVs.

As others have already said, this is pretty easy to manage. There's a lot of research being done on valve replacement. If you DO have a child or two with a BAV, by the time it's discovered (in their 20s), they'll probably run a tube down the nose, push a button, and a robotic device will repair the valve. (Yeah, a bit much of the science fiction), but repair and management should be much better than it is today.

I wouldn't forego parenthood because of the 'possibility' that a child may also have BAV.

 

[Superman]

Ask your husband if he wishes he had never been born. How about all those who are “normal” yet face bypass surgery later in life? Or cancer? Being born is a death sentence, so you enjoy what you can while you can and strive to leave this place a little better than you found it.

I’ve got five awesome kids. Didn’t screen until we already had three. Didn’t know it wasn’t needed. I had zero family history and thought I was a fluke.

Two of my kids show a mild presentation. Wouldn’t know about either based on their overall health so far. Neither have a murmur yet. One shows trace regurgitation, the other mild. None are as bad as I was. Surgery as a teenager, avoid exertion, no extracurriculars, weight restrictions, etc. Second surgery in my thirties.

Still glad I’m alive and I’ve enjoyed my life despite a couple bumps in the road. I’m also a lot healthier than many “normal” people I know who smoke and drink, eat too much, and don’t exercise. So I’ve got a couple plastic parts! I can still run and bike and play with the kids and enjoy my wife. Life is good.

 

[Superman]

Oh yeah. I’ve also been fortunate to always have decent health insurance.

 

[pellicle]

You raise a very scary set of issues. With inexpensive genetic testing, it's possible that, in the next few years (if not already), these tests will detect markers for all kinds of genetic disorders. There may even be pre-marriage genetic counseling, warning the pair of possible inheritable disorders.

GATTACA

 

[pellicle]

Mathias' condition was deemed congenital (Ascending Aortic Aneurysm, BAV), and I am wondering if anyone has insight into family planning around these genetic issues or has gone through it all and their kids are just fine?

I don't have kids but this issue was something I as a BAV'er knew from an early age would likely be genetic. Its now well understood to be part of a bunch of genetic traits. I was vexed about this for some time and I believe its fair to say that it drove my choice of what I studied (Biochemistry and Microbiology) and I learned later that Dr Watson (of the DNA discovery fame) also had a similar drive but for a different genetic issue.

I have come over time to actually see that this has turned into a personal strength not a personal detriment. For sure in an earlier time I'd be dead well before now, but I am fortunate to live in a time where science has developed sufficiently to allow better options (than just death).

Coping and dealing with the challenges has offered me the opportunity to find inner strength that my other perfectly healthy cousins never found.

I have always striven for what I obtain, because of the lessons I learned early in life (I was diagnosed at 5, I'm now 55 and have had 3 OHS) that life is what you make it (I recommend you watch GATTACA I mentioned above, its always struck a chord with me).

a translation of a great Stoic Marcus Aurelius

Be like a rocky promontory against which the restless surf continuously pounds; it stands fast while the churning sea is lulled to sleep at its feet. ​

I hear you say, "How unlucky that this should happen to me!" ​

​

Not at all! Say instead, "How lucky I am that I am not broken by what has happened and am not afraid of what is about to happen. The same blow might have struck any one, but not many would have absorbed it without capitulation and complaint."​

​

 

[Protimenow]

GATTACA

INDEED

 

[Superman]

GATTACA

“I never saved anything for the swim back.”

 

[pellicle]

“I never saved anything for the swim back.”

and it was never hard to endure Uma Thurman either

 

[Keithl]

Hello all,

Mathias' condition was deemed congenital (Ascending Aortic Aneurysm, BAV), and I am wondering if anyone has insight into family planning around these genetic issues or has gone through it all and their kids are just fine? I know it really scares us both to think of having a kiddo go through all of this crud, but we have always wanted a family. Is there anything we/I can do to help prevent this from happening to my future children? Should we plan to not have children at all and explore alternatives? Should I consult a genetic counselor? Any advice or experiences would be so helpful. Just talking with you all is so helpful. I'm so grateful to have found this platform.

With our marriage pending (probably less than a year!), I want to start the kids discussion with doctors now and make sure all of our ducks are in a row before we do start trying.

Thank you in advance!
Jill

My cardio mentioned it tends to run in family and surely many in my family tree have had their issues with various minor heart issues, my BAV and aneurysm being the worst of it, but they recommended to screen blood relatives.

Honestly life is a crap shoot, I would not get all hung up on it as the odds are lower and it can be fixed easily.

 

[scott.eitman]

Honestly life is a crap shoot, I would not get all hung up on it as the odds are lower and it can be fixed easily.

Great quote! Are you going to screen for everything that could go wrong? I had BAV, but have a child with Down syndrome. I have 3 more daughters and one has connective tissue issues and one is hypo thyroid and one rides horses. If you are that scared, I would consider not having kids until you are truly ready to deal with life.