So Upset. My baby has BAV...

[Tiger]

So, just found out my 2 Month old baby girl inherited my BAV.. There was no murmur found/reported at her birth and her 2 week apt..then the doctor found a murmur at her 2 month apt and thought maybe it was just a commonly found VSD but we took her to pediatric cardiology yesterday for her echo and found the bad news. The good news is that the doctor said it is as mild as it can get...it doesn't have Any stenosis/regurgitation yet. He also said that babies have a 10% chance of inheriting it from their mother..and we fell in that unlucky percent. It just kills me to know that my beautiful baby girl has to go through the same crap I'm going through now...of course we are hoping and praying for the best ..maybe hers won't get as bad as mine..but just makes me feel bad I passed this onto her and she may have to deal with surgery and possibly not be able to have kids or participate in certain sports.

 

[Tiger]

Also, we were hoping to have more kids depending on my BAV condition...and now knowing she has it, I don't want to pass it on to anymore children.

 

[AZ Don]

Sorry that you have to go through this with your child. Given the advances in the last 10-20 years it's mind boggling to imagine the advances that may occur during your daughter's lifetime. As I just posted in this thread:
http://www.valvereplacement.org/forums/showthread.php?41751-Bicuspid-Valve-Aneurysms-Elsewhere

there is speculation that Losartan may address the underlying problem in those with BAV that leads to aneurysm. If this is true, I wonder if it can also address the deterioration that often occurs with BAV? As far as the risk of passing this on to kids, all I can say is that while having heart surgery was no fun, I am enjoying life immensely despite having a BAV.

 

[ElectLive]

Tiger - As a parent, I understand your feelings, but I think it is important to keep things in perspective. For example, if your daughter did not have BAV, later on in life would you have asked her not to have children? After all, BAV skips generations just as often.

I was diagnosed at birth, as mild as it could get, but barely detectable, much like your daughter. In my experience, I couldn't have asked for a better childhood or anything else since. Everyone faces something in life, and I can certainly think of much much worse conditions or circumstances. I personally never had any thought that I was a victim, directly or indirectly, of anything or anyone...certainly not my family. I was born to have BAV for whatever reason, putting the relatively small odds on anyone in particular (other than a higher being) seems a little unfair and inappropriate to me. The world would be a much smaller place if parents stopped having children as a means to avoid passing on hereditary conditions. Heck...I'm Type 1 diabetic too so my dear parents must have really had it in for me! :rolleyes2: I'm kidding of course. My parents are the best. I'm pretty sure my kids are glad they had me too... :wink2:

Yes, your daughter is unlucky to have been born with BAV, the majority of children, even with a BAV parent, are not. You are well within your rights to be upset...I would be too. But your daughter has many other things to her advantage, that many with BAV do not. First, you are aware of the condition from the beginning. Second, the surgery that she may not ever even need continues to become safer and more routine each and every year, with continual advancements in surgical technique, prosthetic valve options, and related clinical care. Third, you are there for her with first hand experience and obviously the undying love of a parent. So, I'd say she's pretty lucky...

Best wishes to you and your family.

 

[Carol]

I did not know until I was 71.Maybe she will live a long life with 4 children and 7 Grandchildern like me.

 

[AZ Don]

FYI, I was just going thru my notes and I documented that about 30% of people with bicuspid aortic valve disease develop complications: aortic stenosis, aortic valve insufficiency, aortic aneurysm (I didn't document the source). So odds are your daughter will live a normal life except for some extra tests. The chances that another child, or her child has a BAV AND has complications from it is then only 3%!

 

[Agian]

As a father, my heart goes out to you.

There are young people who have been diagnosed with BAV here that are leading robust and active lives. Most of us don't get symptoms until middle age. IF your daughter ever needs surgery, it may not be for decades. I went and saw a surgeon for the first time on Friday. He told me that if he implants a tissue valve, the next one will be through the groin. When I asked him when this possiblity will be available for everyone, he said 'very soon'. He started babbling about what the researchers are up to, but I zoned out. By the time I get my valve, there may be some uncertainty; but twenty years? My mother went to see a cardiologist yesterday who told her she had a mild stenosis (not BAV). He told her she should be OK, but there's a small chance she may need a valve replacement in advanced old age (maybe 10 years). He said he'll discuss this with us if and when the time arises: 'They'll be putting them in through the groin by then.'

Adam Pick, the wonderful man who wrote the book some of us have read had surgery for his BAV, married and is now a father. I don't see why your daughter shouldn't have children, or you for that matter. Don't forget that BAV affects 1-2% of the population.

It's OK to be sad. Take care.

 

[yotphix]

Tiger, I fully sympathize with your notion that you have burdened your little girl, but I'd encourage you to seriously consider the facts. As others have noted, there was a relatively low probability of you passing it on. It has turned up, but again, the probability favours nothing serious ever resulting from it. (Especially since she will grow up knowing the value of good dental hygiene, and she'll know never to let a wisdom tooth abscess like I did!). Even better, if it does turn out that it becomes a problem one day, it will be a significantly smaller problem for her than it was for any of us, given the pace of advance in the field of BAV replacement (and even repair). Who knows, maybe they'll grow her a new one from her own stem cells and and implant it robotically!
Last thing, is that even if medicine suddenly hits a brick wall, it means she's no worse off than us. Most of us get to at least our 40s without any significant issues, and those who have them earlier deal with it just fine. She'll be monitored her whole life, and whatever may come of it, she'll be looked after.
I worried about whether I should have a child, but since surgery I've married, and now have a beautiful 5 month old girl. She's got three AV leaflets, it seems, but knowing what I now know, I won't hesitate to have another, and won't worry too much if the next one has two like me!
Let your worries go to the back of your mind, and enjoy this most wonderful, fleeting moment in your life. It goes by altogether too fast anyway, so savour it while it lasts!

PS. did you read this one? http://www.valvereplacement.org/forums/showthread.php?41768-33-years-today!!!

 

[AgilityDog]

If you were a diabetic, would you have foregone children?

If you had a family history of alzheimers, or parkinson's would you have foregone children?

This is not a death sentence. Enjoy your child.

 

[Heart Of The Sunrise]

Better that you found out than be unaware of her condition. Yes, it is devastating to know she inherited this condition. I did not find out till I was 56.5 years old. My aortic aneurysm was 4.9cm at that point. I am fortunate that it did not kill me.
I would rather have been having my doctors be aware of my BAV and be keeping an eye on it from infancy. After his death I learned that my late father had it. Although it was not the cause of his death. I also have a 30 year old nephew who had it surgically repaired at age two months old.

 

[ElectLive]

Even better, if it does turn out that it becomes a problem one day, it will be a significantly smaller problem for her than it was for any of us, given the pace of advance in the field of BAV replacement (and even repair). Who knows, maybe they'll grow her a new one from her own stem cells and and implant it robotically!

Parents and grandparents of young children with BAV do have a lot to hope for. Stem cell tissue-engineered heart valves have already been created and tested in animals with promising results. I've mentioned another innovative concept here: http://www.valvereplacement.org/forums/showthread.php?39779-Nano-Nano-The-Valve-of-the-Future that is equally exciting for the next generation.

 

[sood]

I am sorry to hear about the issue with your baby. As a parent I was extremely worried about our son and thankfully he did not inherit my bad genes. But that is beyond the point. Your baby will live normally and if she needs a valve replacement in the future there will be a plethora of options available down the road as everyone has explained. Life and time are on her side.
Take it from me, I most likely had a aortic valve problem since birth. I didn't find out about it until I was 23. Before that I played high school basketball and played basketball competitively several years prior to that. Here I am today, with a new valve and alive.
My advice to you is to not limit your daughter out of fear, unless the doctors say she can't do xyz. Keep an eye on her heart throughout the years as I'm sure you will with regular checkups, and let her live.

 

[Tiger]

Thank you all very much for your nice replies. I do feel better about it now. It is unfortante that it happened but there is nothing I can do about it. All I can do is be the best Mom I can be and provide a great life for her and follow up with her cardiologist appointments and of course continue praying for her. Like you all said, it's best that it was found early so they can monitor it and since I have been through it myself I will know what to expect. And it is encouraging to know that medicine is advancing and by the time/if she needs surgery something better will most likely be out! I will promise to stay positive and continue enjoying my baby girl! Thank you again for the positive advice!

 

[yotphix]

Well said Tiger. Sometimes I wish this forum offered a like button!

 

[Jason2012]

Hi Tiger,

I know how this feels, and I empathize with you. I was misdiagnosed with BAV about a year ago (not complaining), and I was just sure my kid was going to have it as well. Odds are that if your child becomes symptomatic, it won't be until they're in their thirties or beyond. If you read up on singularity theory, and if you can find hope in it like I did (exponential growth graphs don't lie), like me, you may really believe that we are going to be dropping in new replacement hearts (whether biological or mechanical) and related things (ex: ascending aorta sections, aortic roots, etc.) with far less challenges than exist today in the coming decades.

Your girl will be monitored, and as she grows into a woman, she'll be under such routine watch (vs. people who go undiagnosed until they have problems) that no major complications will be allowed to develop. And if something is in the early stages of development, it will be fixed.

I hope those thoughts help. Those thoughts, plus me realizing that it's a silly notion that a maturing young adult would blame their parent for something like this -- it just doesn't happen. When I thought I had BAV, the thought of "Oh dern those people who created me and loved me and raised me!", well, you see how ridiculous that is.

Thanks for your post. Also, sports are overrated.

 

[tom in MO]

If it's just a BAV, there will be no sports restrictions or any restriction for that matter, other than routine testing.

I had a heart murmur since birth and had no restrictions, not even when they finally invented the echocardiogram and gave me a diaganosis, nor at the end when the stenosis was bad and I was getting echos every 6 months.

 

[chaconne]

Also, we were hoping to have more kids depending on my BAV condition...and now knowing she has it, I don't want to pass it on to anymore children.

Tiger,

I wouldn't let the fear of passing on BAV stop you from the blessing of having more children. We all have difficulties in life and there are many other reasons not to have children other than passing on defects. In fact, having BAV and going through what we've gone through may actually help shape your children's character, making them less selfish, more empathetic to others, and able take more joy in life than those who don't go through difficult things. I, for one, chose to have a third child even though I was at risk of dying from stage-3 Melanoma skin cancer. Thank God I'm still alive 4 years later, but even if I had died, my wife and I decided it would be better to have more children to be around to comfort her and each other.

 

[Luana]

I went and saw a surgeon for the first time on Friday. He told me that if he implants a tissue valve, the next one will be through the groin. When I asked him when this possiblity will be available for everyone, he said 'very soon'.

This was being said over 4 years ago before my AVR. As of now, only the elderly and those who cannot withstand OHS are candidates for the TAVI, so I wouldn't be so quick to believe this.

"Very soon," means nothing to me.

 

[Agian]

You're right; 'very soon' doesn't mean a lot. But I'm sure they'll get there eventually.

 

[Superman]

Tiger,

Sorry to hear this. I do know how hard it can be to digest. I'm a father of five wonderful children. Three have been tested, two present a very mild form of BAV. Functionally normal, but definately BAV. No limitations and may never require intervention.

I think the 10% number Dr's throw out can be viewed as misapplication of statistics. "The incidence can be as high as 10% in families affected with the valve problem." What does the doctor define as a family? If it's a family of four, that's garbage because you can't have 10%. It's either 0%, 25%, 50%, 75%, or 100%. In your immediate family, you have a 67% incidence (two of three). So clearly they're talking about some much larger definition of "family". Likely including multiple generations. Considering the detailed testing has only been available for genetics and defects for a couple of generations - how complete is their data? Going back 50 years - it likely only includes those who had complications and were properly diagnosed vs. those who lived just fine with the condition and went undiagnosed.

Even if it is a 50/50 shot at passing it along, carry it out a few generations and see how the family cluster can quickly get down to 10%. I've got five kids. Two are positive. I've got two negative siblings, both have one child (negative as well). Let's assume 3 total generations including me and my negative siblings. F(+), M(-). S(+), S(-), S(+), D(-), S(-). GS(+), GD(-), GS(-), GS(-), GD(+), GS(-), GD(-), GD(-), GS(-), GS(-). SM(-), SS(-), SGS(-), SGD(-). SF(-), SS(-), SGS(-), SGD(-). Add the fourth layer of 28 total great grandchildren with only two ending up positive.

Looks confusing, but not including unaffected spouses - we've got 53 people with only 7 ending up positive in total for a 13% family penetration. Include a bunch of negative spouses, and penetration is less than 10%. However, each positive individual still has a 50/50 shot at passing the gene along. If even one of those has two kids that result in two negative coin flips, the gene could be gone from that leg.

All this mess to say that the 10% family penetration is not the same as saying you have a 10% chance of passing this along. I believe our individual chances of passing this along are much higher - closer to the 50/50 range. However, every positive test will not result in an AVR. In all of my extended family - I'm the only AVR patient that I'm aware of.