So Upset. My baby has BAV...

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As a mother I completely understand how you feel. I grew up knowing I had a bav and went to yearly appointments and even had a few procedures. And whilst my mum was fairly over protective between appointments it never bothered me, I've always been active, played sport and just dealt with the few limitations because I never new any different sp it's what was normal for me.
 
My docs told me that it was surprising that the ones who did my ASD repair at 10 years old didn't see the BAV, otherwise they could have addressed it then, instead of waiting until I was in my 40's and suffering from CHF and LVH. Your daughter is fortunate that they know about it before it causes irreversible damage.

ASD repair at age 10, Deborah Heart and Lung
AVR on 9/21/12 (age 46)
Medtonics OpenPivot supra-annular 24mm, Dr. Mark Ammons, St. Joseph Hospital, Denver
 
Somewhere around half of people with BAV never require valve replacement and live normal lives to die of something else. The course is not predictable. It may progress or it may be totally stable for many decades. All of us had BAV at birth. I never knew I had this until I was 60. I led a completely normal, extremely active life, even after diagnosis with fairly advanced aortic stenosis. I ran track and cross country in high school and aub 3 hour marathons as an adult. I was in such good cardiovascular shape I could whistle while I ran my 10 mile training runs at 5 and 1/2 minutes per mile. Those two defective leaflets did a damn fine job for more than 6 decades.

Here's to your baby daughter. Wishing her many decades of good health and peaceful coexistence with her BAV.
 
My son was diagnosed at 10 weeks old with BAV. He was also diagnosed with COA.

My wife and I have no history of heart conditions nor have one. Random fluke? I hope so, but I wouldn't put too much thought on your daughter passing it on. Life is good, and BAV is far from a condition you should fear enough to not create life IMHO.

My son is going on 20 months now. He has no signs of any type of heart condition other than some turbulent blood flow due to the BAV and the murmur that follows that. His valve looks great and he is great. I wouldn't change that for the world nor have any regrets. :)
 
I think it is great that your child has the opportunity to know what is wrong. I went through a lifetime of not knowing. Keep an eye on it but if the doctor says your child can do most things let them. I'd be more concerned about your own health. I can't imagine what advances will come about in the next twenty years so this baby will be fine. Having another child may impact your health preventing you from enjoying life. Definitely, talk to your doctor.
 
Hi Tiger/everyone

I'm coming to grips with my own BAV an related issues and some times think why me. But then I ask myself if God gave me a choice to trade my life right now risking everything I have (great wife and kids, supporting family, great career) at age 31 for a life without BAV I'll take the BAV every time. There is so much more to life and not to mention such a treatable condition like Everyone has indicted, why not have 30 more kids. BAV is just one of millions of possible road bumps our kids may experience in there lifetime....if you think of every other worse possibility then nobody should have kids!

But believe me I understand where you are coming from.
 
Hi Tiger

So, just found out my 2 Month old baby girl inherited my BAV..

my mum found out about my condition in about 1967, back then people just didn't know what the situation was and many thought it was a death sentence. I can only imagine it must have been terrifying for her to have found out about it (as she'd lost a baby 18 months before me).

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Mum was a strong hearted woman who grew up on farms. She wasn't technology oriented, but had had her own life saved by the new technology of penicillin. So probably this gave her some hope that the medical world could save her baby too. I was lucky in that as I grew up the medical science around me grew with my needs. For sure I was an early patient, but you know I'm still here.

I'm the only one in my family who has this disease. And if I may be frank, looking at how everyone's lives went I can say that me being a library kid didn't hurt me. I focused more on education and developing myself than any of my cousins did.

Many many times I have contemplated my life and wished I could have been big strong bastards like them, but then I look at the hassles in their lives and am glad I had my life as it was.

I have developed the view that people show who they really are through adversity. By being faced with challenges I am sure I grew stronger and wiser.

For starters simply being aware of my own mortality from an early age helped me to see that life was a precious gift and to be lived with awareness of that.

Would I have left my small town, lived in 5 different countries and have taught myself languages and seen what I have seen if I had not be BAV? Probably not.

My BAV gave me the opportunity meet my wonderful wife (in South Korea) and to travel literally from one end of the earth to the other to live our lives in Finland and then Australia.
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The technology is improving all the time. We have methods of monitoring ourselves and testing our blood which was unimagined even by Sci Fi writers at the time of my birth (and to be sure there are some greats in that period.

To be honest I think I feel sorry for my cousins who were born perfect.

Get out the movie GATACA and watch it. I understand how you feel about at least one aspect, for I too worried about the possibility of passing my genetics onto my children. When I was younger I started a career in Biochemistry to study DNA and Genetic engineering. I hoped to be involved in working towards making my kids lives free of this. Over time (starting with my studies) I realized that there actually wasn't anything wrong with me, its just genetic variation. Its mainly a perspective which makes us think of a mutation as being a defect. If you look at the movie Blade Runner, when compared to a Nexus 6 replicant (fiction of course but the metaphor is useful) we are all weak and fragile in comparison.

When my best friend died of cancer at 20yo I realised that there were far worse genetic mishaps that could occur (for cancer is related to your genes and to genetic mutations).

Love your little girl and teach her to be strong and confident. Teach her that she has only the limitations that all humans have. No more, no less. Teach her to respect herself and not feel crippled.

I'm sure she will grow up loving you for your strength, just as I did my mother.
 
Hey Pellicle,

Is that picture you and your mum? It is absolutely beautiful. You must have a nice print hanging somewhere special. (And if it is someone else, I'm sure that whoever it is has it displayed prominently, and that you and your mum looked just as nice.)
 
Hi Clay

Is that picture you and your mum? It is absolutely beautiful

it is ... and this time I can't claim to have taken it ;-) Dad managed to get it dead on the money exposure wise (*shock*) on Kodachrome which is a dam fussy film to work with. ...and because it was a slide it was rarely seen by anyone unless (insert organ music) the projector came out (as prints from Kodachrome were deadly expensive in the sixties).

My wife and I found it after going through some stuff after dad passed away.

and that you and your mum looked just as nice

chuckle ... well I'm certain mum was a good looking woman, but the looks sure skipped a generation in my case ;-)
 
Aww Pellicle, Thank you for that sweet reply and beautiful pictures! Thank you everyone else too for the encouraging words! We are doing a lot better now and we got great news on her last echo-no stenosis, regurgitation or dilation of the aorta! I am praying it stays like that forever! She is almost 7 months now and so beautiful and growing and now she is crawling! I am so blessed to have her and hardly even think of her BAV. But of course will make sure we make every appointment and now I have the added knowledge from mine which will help! We are also really hoping to have more someday! I am meeting with a surgeon next week, so I should be finally getting my AVR soon! I'm nervous but also a little anxious to get it finally taken care of.
 

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