Having kids when you have BAV

[carista]

All this talk on the board lately about getting everyone's kids tested for BAV makes me wonder about having a kid of my own. Many (if not all) of you I know had kids before even knowing about your heart conditions, or at least without knowing the risk of passing it on. Does it seem cruel to anyone to have kids knowing there's a chance you could pass a bicuspid valve onto him or her? This is one thing I never did discuss with my cardiologist. I'm wondering how likely it is I could pass this on. As far as I know, no one else in my family has ever been diagnosed with BAV so rather than myself inheriting it, I just got lucky (haha) and got mine out of the blue. But that also makes me wonder if that will lessen the risk of me passing it on, or if the chance is just as high. Now I'm wondering if I should even have kids??

I was also curious if anyone knew if Doctors are willing to test a baby right away after you have it to see if they have a BAV, that way you don't have to wait until your kid has a murmur or symptoms before you can get them tested? Anyone know? I think I might remember someone on here getting their baby tested right away but not sure if that was because they already had a murmur or not. Thanks ahead for any replies.

Carista

 

[aussigal]

You knew I would pop up here...

Cos i had 3 without knowing of my BAVD but I did know I had had a murmur as a baby.

They didnt even find mine til 10 years after I had the boys.

My sisters' friends' baby was diagnosed as a 12 week old fetus I dont know if shes a once-off or an inherited case I shall ask next time I see Jac.

But I do know that with the very good Ultrasounds available these days these things are getting diagnosed earlier all the time. And no I dont feel bad about it anymore cos these 3 will have very few problems because it will be amnaged all their lives and so-far they havent had any damage done by their dodgy valves. I had a little moment of "why didnt I get myself echoed earlier to find this " but I got over that quickly. I dont blame my mum or dad for giving it to me its just genes and we all need those to be unique.

Now lil Grace had a coarctation as well (the baby that is ) and is now just fine or as fine as she could be. I imagine if you are already a BAVD'er that they will scan your pregnancies very carefully and you would be treated as a high-risk pregnancy which just means they take extra good care of you and check up on you much more often than normal mums to be.

You may even decide not to have your own babies but to adopt some unfortunate lil-one like some of our other members...
all are great choices kids are fabulous and teach you so much.

I just persisted in asking for an echo for the one I thought most-likely to have it and I must have nagged enuf cos he wrote me out the referral for Steves scan after a few asks .

and lastly the heritability factor is fairly high somewhere around the 75% mark from memory.

 

[Marguerite53]

don't be dissuaded

don't be dissuaded

Carista. I don't know what to say. I don't think you should make up your own thoughts about having children. Talk with your doctors.

I did know about my bicuspid before I had my children. All of my doctors were aware and very comfortable with my health and stamina. There was NO stenosis at the time. Therefore, there was no disease. I was healthy, heart was healthy, just malformed. I had my first child at age 28, 6#, 3 weeks early. Second child at 31, 8# right on time and my 3rd at 34, 10 1/2 # 3 weeks late. (they sent me to the hospital for a day and tried to induce labor and I failed!! They sent me home and told me I'd have a C-section if she didn't come in a week. She came on her own, about 12 hourse before they were going to go after her!) I'm tall and large boned and my pregnancies were easy, deliveries fine!! I insisted on being treated with antibiotics during delivery, doctors concurred, all went wonderfully. Right now I know that our last child has no heart concerns. Don't know about the other two. No murmurs. VERY VERY healthy children (knock on wood) up to this time.

Talk with your doctors. They can judge your physical ability. Some people aren't predisposed to having an easy time due to their physical make-up. Explore those incidentals about yourself. Take your doctor's advice. If you really want your children, don't be discouraged by this defect. But do get good advice.

Because I was told it was not passed down (and all of my doctors still maintain that it is not hereditary) I had no concerns about having the children. I don't know how I'd feel if it were conclusive that it was inherited. I just don't know how I'd feel. I wanted children very much. I probably would've taken the risk. I don't think it's selfish. These children are very well taken care of and abundantly loved and bright. I knew what I could give them and have been lucky to be able to live out my egotistical young adult notions!!

So talk with your doctors. Let us know.

Marguerite

 

[carista]

And no I dont feel bad about it anymore cos these 3 will have very few problems because it will be amnaged all their lives and so-far they havent had any damage done by their dodgy valves. I had a little moment of "why didnt I get myself echoed earlier to find this " but I got over that quickly. I dont blame my mum or dad for giving it to me its just genes and we all need those to be unique.

I'm sorry, I didn't mean to imply that you should feel guilty because you did have kids. I certainly don't blame anyone for my heart condition and wouldn't even if I knew it was inherited. I'm more concerned I think about how I would handle it, I'm a natural born worrier and can only imagine that it will be worse if and when I have a child of my own.

And yes I knew and hoped you would likely pop up here. You are practically becoming an expert on kids with BAVD unfortunately (and fortunately, guess you can look at it from both sides) Thanks for the reply.

Carista

 

[aussigal]

Thats ok...I wasnt offended and dont feel bad at all about this...I am a pretty easy going aussie girl

know some of the data is confusing but then we are only just beginning to unravel the disease that is BAVD so I feel the more we can help the better.

I am a big fan of Arlys at BAVD foundation and she has asked me if I would like to be the Aussi connection for the foundation.. ...I was humbly thrilled.

I am also glad to help educate. I just realised that I have quoted 2 diferent heritability figures and know that will probably confuse you more but they are actually from 2 different studies...I shall dig-out the one that quotes the higher 75% because thats about what we scored here at our house. But then if you go on the 20% plus 2 @ 50% you get 2/3 with it as well....the article that states that awfully high percentage is the one quoted in the other thread going here about "why should we test the kids?" its the link from ChrisandGary..excellent test they did too. I think it relates to the familial clustering but dont quote me on that.

The more of us that come out of the woods so to speak the better we will be able to understand this. I really wish these relatives were more willing and not so scared to undergo a simple echo in the aid of researching and helping in their families health.

We need one of those medical TV programs to do a "special" on us and I have 1 in mind in Australia that I am considering E-ailing with our story .


Oh and Grace was a one-off mutation that gave her the BAVD and Coarctation.

 

[PapaHappyStar]

All this talk on the board lately about getting everyone's kids tested for BAV makes me wonder about having a kid of my own. Many (if not all) of you I know had kids before even knowing about your heart conditions, or at least without knowing the risk of passing it on. Does it seem cruel to anyone to have kids knowing there's a chance you could pass a bicuspid valve onto him or her? This is one thing I never did discuss with my cardiologist. I'm wondering how likely it is I could pass this on. As far as I know, no one else in my family has ever been diagnosed with BAV so rather than myself inheriting it, I just got lucky (haha) and got mine out of the blue. But that also makes me wonder if that will lessen the risk of me passing it on, or if the chance is just as high. Now I'm wondering if I should even have kids??

I was also curious if anyone knew if Doctors are willing to test a baby right away after you have it to see if they have a BAV, that way you don't have to wait until your kid has a murmur or symptoms before you can get them tested? Anyone know? I think I might remember someone on here getting their baby tested right away but not sure if that was because they already had a murmur or not. Thanks ahead for any replies.

Carista

Having a BAV is not so bad I think, its curable now and will become increasingly manageable in the future. I think it's taught me a lot I wouldnt have learned else -- value/enjoy life and health.

I also have no-one in my very large family who we know has it -- Its very likely the etiology/genesis of the condition is complex and there could be non-hereditary causes as well.

If you take a darwinian view and accept that the some forms of BAV are heritable, the conclusion to draw from its still being so prevalent in the population is: its not serious enough to have wiped itself out from the gene pool. If it left individuals unfit to survive then it would have wiped itself out or would have been a lot rarer.

Burair

 

[geebee]

Carista,

How far should we go when worrying about what we pass on to our children. Would we worry that they might have asthma, arthritis, diabetes, etc. There are so many things that we can pass on and we never know what will happen. There is a chance you may pass on your BAV and just as much of a chance that the only thing you will pass on is the greatest love of being able to give life to a child.

God will make the decision of what you and your children can handle. If you feel you have the love and ability to give a good home and life to your child, you should have children. Everything else will fall into place.

 

[Marguerite53]

If you take a darwinian view and accept that the some forms of BAV are heritable, the conclusion to draw from its still being so prevalent in the population is: its not serious enough to have wiped itself out from the gene pool. If it left individuals unfit to survive then it would have wiped itself out or would have been a lot rarer.

Burair

I really love having you in this community, Burair. You have such clarity and you add such a depth of scientific thinking. Thanks!

Marguerite

 

[Emma]

Hi Carista,
The scans you'd have when you got pregnant would pretty much tell you if the baby had a CHD. Whether or not that CHD is an inherited one would have to be tested later on, but having a baby/child with a CHD really isnt that bad either. It teaches you a hell of a lot! I know I am a changed person for having one of these very special children. I have learnt what is and is not important in life and a whole lot more from Chloe. So please don't be scared of havign a child with a CHD even if it does turn out you have a risk of passing your condition on.
Emma
xxx

 

[Emma]

Sorry, i shouldve clarified that properly. The ultra-sound scans will show up most heart defects but don't always show up valve problems.

Over here, babies who are at risk of CHD's are echo'd about a week after birth to give time for all the normal newborn heart bits like a PDA to close over and give a clear picture of the heart. So yes, your baby could be scanned very early after birth to see if it has BAV.

xxx

 

[Kate]

Hi Carista,
I don't have kids, and so can't speak to that directly. However, as my parents knew about my heart problem from birth, there must be a way to test infants. Also, I want to echo the previous comment that having a bicuspid valve isn't so bad. As a kid, I thought it was pretty cool to have EKGs done and, although I knew from an early age that I'd eventually need surgery, I don't remember it concerning me particularly. Kids are so tough, really.

I chose not to have children and want to encourage you to feel okay about making that decision too - if you think it will make you happier or allow you to pursue the kind of life you want to have. However, if you really want children, I don't think you need to let fears about passing along a bad valve discourage you. Kate

 

[PapaHappyStar]

I really love having you in this community, Burair. You have such clarity and you add such a depth of scientific thinking. Thanks!

Marguerite

thank you, thank you...
Of course I would rather have been a gangsta rapper like this guy...
http://www.newgrounds.com/portal/view/233937
(click on "watch this movie")

 

[Marguerite53]

...............

...............

Burair............

Kate. Excellent point about choice. Very important to honor thyself.

Carista. Hope we are helping!

Marguerite

 

[Mary]

thank you, thank you...
Of course I would rather have been a gangsta rapper like this guy...
http://www.newgrounds.com/portal/view/233937
(click on "watch this movie")

Burair,
How did my crystal ball end up on that screen?

 

[Eowyn Rose]

HI Carista,

I am a mum of two beautiful sons 10 and 14 years old. I kind of hesitated to have children because my children might inherite my heart problems. I was told that boys are more likley to inherite the defects.The first born had all the ultrasound test done when I was pregnant to find out if there are any abnormalities around his heart. No found.
With the second boy we never bothered to check.
Both boys are successful in their sports and are able to do all the required training. When they are older we will do a full check up. However it never yet seemed nesessary to the doctors. I do not know what their odds are or my grandchildren odds will be.
And we worry. Mums and Dad do that. I worried when they ride their bike, when they climbed a tree, when they went to far out in to the water.
You want them to be ok, safe and healthy. I lived with the disease all my life. I love living. All that really matters I can expierence. And of course it can be fixed.
I am ok, safe and healthy.
Eowyn Rose.

 

[carista]

Thank you so much of everyone for your replies! It definately helps put things clearer in my mind. I guess if my kid knew all along that they have the heart condition and what it might entail it might not be as much of a shocker if all of a sudden they had to have surgery. And it definately is true that I could pass on anything not so great to my child, which geebee mentioned, and I'm not going to sit and worry about every single thing.

You guys have helped me come to this conclusion also...if my mom knew before getting pregnant with me that I would have this heart condition and decided not to have me just because of that I would have wanted to kick her butt I'm sure my kid would feel the same way.

Thank you to each and every one of you that responded, I feel so much better about it now!

Carista

 

[WesternNYer]

hi Carista...

hi Carista...

I'm 43...and just had a bicuspid Aortic valve replaced on Nov 21....I come from a family of four children and I'm the only one as of yet that has had any significant heart issues.Would my parents (who are here with me now during my recuperation...) have debated having me if there was a chance that BAV could be a possible end result....I think they would have gone ahead with the hope that I would not fall into that 1% of the population. But as I did....without their knowledge or mine until just a few weeks ago, find out that I did hold that unique genetic code....I could only say don't cheat the future ( yours' and your children...)by basing decisions on what ifs.What ifs are just that,and nothing more. Besides...I lived about 41 years not knowing,or worrying ,for that matter about an eventual surgery....and we all face unforeseen things everyday. And when it became apparent that I did need surgery....I did what was needed. And my family has been wonderful....we're Irish and closeknit,so that has helped alot. So if BAV is passed on...your experience will strengthen the family you have built.That said I wish you the best of luck.... Tim

 

[aussigal]

Thats the attitude you need to accept,,,
I too am very happy to be here and have 3 wonderful sons as well...

and how about that if we BAVD's or similar were so bad we woulda been wiped out years ago ...that thought had crossed my mind too.


I am actually glad I didnt have a clue when we had our kids cos I didnt have to even have that discussion with myself and hubby and docs. Many of us here I think just went ahead and had kids anyway...cos we have survived this long and there is every reason to believe medicine is only going to advance so much further in the coming years that these things will be no longer putting people in precarious positions.

My Cardioligist has a great interest in the advancements being made in Cardiology and says there are so many wonderful things in the not so far-off future for us heart-patients its just amazing.

I read recently of a technique where they implant a patients own stem cells from their own bown marrow into the heart after a heart-attack and the increase in quality of recovery is just fantastic. So imagine if they can plant these stem-cells in our dodgy aortas or valves and they can re-generate ,,,how fabulous does that sound ...No more open-heart-surgeries even !....


So glad you started this topic off its a very interesting thought provoking thread.

 

[DinahS]

Trust your heart!

Trust your heart!

Carista,

I was born with BAV, AS, & CoArc and no one else in my family had this but me either. I lived a happy, normal, & active childhood and have two beautiful healthy children also. They have no murmurs and I didn't pass it on to them. I had no problems with pregnancy and no problems with the BAV until a cardiologist told me that I needed to have my AV repaired b/c of what a test said and it seems like that's when all my "heart problems" started. I am making it though and it's been tough at times, but I am here and I plan on being here for a long long time and I will get to see my children grow up and my grandchildren grow up and that is the only thing that gets me through the tough times. Don't worry at all about your children getting it. You do what you feel in your heart is the best for your and your husband. When I was little, everytime someone asked me what I wanted to be when I grew up, I told them a Mommy. Well I am and I wouldn't change it for the world. I am truly blessed. God will not put more on you than you can bare. Don't not have children if that's what you truly want b/c of some chance they might get what you have. There is a God given reason we were born this way. I look at it as though God has entrusted me with something and I was ready enough to take this on. And he has done nothing but bless me for it and carried me over every single mountain I have came to. I am definitely closer to him b/c of it and for that I wouldn't change a thing. Trust your heart and do what your heart tells you. You will be blessed for it and he will see you through it. God Bless!

Psalms 91 - Scripture and prayer for protection.