Newbie - infant with bicuspid aortic valve

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UNCGIRL44

Member
Joined
Jul 18, 2012
Messages
23
Location
NC
Hi all! I somehow managed to stumble on this forum after searching through the medhelp forums on BAV. I gave birth to my beautiful daughter at the end of May, our first child. On our first visit back to the pediatrician, she noticed a murmur....she said it was likely benign, not to worry, but that she was very aggressive with any heart murmurs and referred us to a pediatric cardio for a workup. At that visit I was told she has BAV, but that at this point it is "extremely mild" and we are to come back in 6 months, with visits to be spaced out further after that if all is well. I am pretty sure he said the valve is not an issue (it is only partially fused and some blood does get through, I think), but that she would be monitored for atrial stenosis...forever.

I honestly was just in shock that anything was wrong, but I wasn't overly concerned. I have had MVP since birth, no problems. I didn't have any questions for him because I didn't even have time to digest this information! As soon as I got home I was all over the internet and by the time my husband got home I had cried so hard and for so long my whole face hurt. He thought I was overreacting to this, and said we should schedule a meeting with the cardio with questions. I did that and we will meet with him on July 30th.

So, bascially, I just don't know what in the world to think. What are we dealing with here? I want to get a realistic picture, but I also need to get control of my fears for my daughter. Right now I am so scared! Everything I look at her I practically break down in tears. I don't want her to grow up with me constantly worrying something will happen to her. That is not good for either of us. The cardio said she would be restricted from football and wrestling....likely not an issue for a girl, but being restricted from anything makes me more nervous about the condition.

Am I overreacting? The cardio certainly did not seem concerned. Are there people who live their lives without any issues? Is there anything else I should do? Any specific questions I should ask?

I know this is such a broad post, but any guidance would be helpful. I'm still trying to get a handle on this and not freak out in the process. I'm sure I will have more questions along the way, but for now thank you for any information in advance.
 
You are not overreacting...you are a mother, a new one at that, and it's perfectly natural to react this way to this news. At the same time, I have great confidence that as this news settles in, you learn more, and particularly as time passes, this could be a relatively small event in the developing story of your daughter's childhood and long life thereafter (recently proven to have no effect on life expectancy). I say this because your story is very familiar to me, but from the perspective of the child (son, in my case) not the parent. My mother has MVP and has never had a problem. I was diagnosed with BAV at birth, 37 years ago, because of a slight murmur and a pediatrician with sharp ears. I have no doubt my mother had a similar reaction. I've never asked her, but knowing her as I do, I know she did.

Believe it or not, this is probably best case for you daughter. The situation is known and can be monitored and it will simply blend into her normal life. She will likely never ask "Why me?"...I never did. Many of those with BAV get diagnosed much later, in the prime of their adulthood lives, mere weeks or months before a surgery they never even were aware might be a possibility. It's a sudden shock I'm sure not easily dealt with.

I've had a yearly echo from the beginning, so yes, 37 in total. They get very boring after a while. I remember being fascinated by them as a child, never scared. It was more a special day, than anything, in fact, a trip a few hours aways usually with special actiivities before or after, thanks to my parents, so just a fun day for kid. I only really thought about in gym class when I was older, old enough to care what other kids thought. I was not supposed to do push ups or chin ups like the other kids. Really no big deal, though, especially when I was better than all the other kids at basically every other activity we did in gym class! :smile2:

Some with BAV are never diagnosed. Some do not ever need surgery for valve replacement. Many do need surgery, though, and I am in the most common group - valve replacement in the 30s to 40s. For others, it may be 20s or 50s (or 60s or 70s etc)...so you just never know. That is the reason for the importance for continued monitoring. Problems in childhood are pretty rare...I certainly wouldn't worry about that until a cardiologist gives you any reason to.

I've lived a completely normal and happy life, and I'm Type 1 diabetic too, so please don't have any worries about how this will impact your daughter's life in a negative way. I tend to think I'm better off for it. Finding out I needed surgery was certainly not the best news of my life, but all in all, not nearly as impactful a process as anyone would guess.

Your daughter is lucky for another reason. Heart valve replacement is amazingly successful now, a completely different world for those getting replacements then when I was born, and things are only getting better. As a father, I naturally worried that both my young daughters mind end up with BAV too (they fortunately did not). Taking parenthood out of the equation, though, just knowing what I know now about the current and future world of valve replacement, I would have very little reason to worry. By all means, let your daughter enjoy a perfectly normal life with monitoring and caution only to the extent your cardiologist advises. When the time comes, when she wants to know more, just be honest about all the reasons why BAV is really not something that terrible to fear. Chances are there will be far more concerning things (from a kid's perspective) in her life whenever that happens.

This place is a great resource to learn more, but just be aware that it's predominantly people immediately pre or post surgery, so the typical conversation is skewed a bit, not a natural fit to your daughter's situation. Hospital websites like Cleveland Clinic and Mayo have lots of great information about BAV, as well as, in the case of Cleveland Clinic, nurses available through "chat" pop-ups and cardiologists and surgeons available periodically through webchats to answer questions.

Sorry this news has put a damper on the joys of new parenthood, but congratulations on your new child all the same. For what it's worth, my second daughter was born 8 weeks after my surgery, and I will always remember that year for my daughter not my surgery. Best wishes to you and your family.
 
Hi and welcome. First, no I don't think you are over-reacting, just not sure of what lies down the road. Anyway, I did not get diagnosed with a murmur until I was about 12 yrs old. The GP to which my mother would take us, was not too concerned and I never had a type of restrictions placed on me. I was a tom-boy so I played baseball, basketball, and all the stuff kids did in the 50's and 60's. Being raised by a single mom, we didn't have a lot of money so our GP keep tabs on me once a year. Then at 1974, I joined the Army, the physical which included EKG showed a murmur but no something that disqualified me from enlisting. Shoot forward to 1977 I had married and gave birth to a healthy son, then in 1979 gave birth to a daughter. During both my pregnancies I was followed by the OB with a stop or two at cardiology. Continued to live life at a steady pace and then finally in Jan. 2008 at age 56, I got baterial meningites and the hospital cardiologist conducted an echo, and TEE. Nothing was found on the valve, but that is when it was finally determined that my aortic valve was bicuspid and very stenotic. I had no symptoms to speak of. The SOB I attributed to over-weight and age. I had my replacement surgery in May 2008 and my little cow valve is just going strong 4 years later.
So truly, just speak with the cardiologist and see what steps you need to take to manage the situation. But ENJOY your baby. Things will work out fine.;)
 
Congratulations on the birth of your daughter :)

ElectLive has explained living with BAV quite wonderfully. I was born with both BAV and Marfan syndrome, but have lived a normal life. Every year, I would go for an echo, but until last year when I had surgery, had very little need to see doctors. I had two uncomplicated pregnancies, which were closely monitored.

Your daughter has as much chance as a long and happy life as any other baby - as ElectLive has noted, with modern medicine BAV does not affect life expectancy. It is unlikely that she will face any problems during her childhood, and regular checks will pick up anything that does arise before it becomes a problem.

Of course as a new mother you are going to worry about this. It's perfectly natural, but you will soon see your baby growing and developing as any other. Be gentle on yourself, the early weeks and months of having a new baby are tough on all parents, regardless of if there are health concerns or not.
 
Congratulations on the birth of your daughter. As a father to a almost 3 year old boy I can only imagine how hard something like this is to digest for you guys. But I want to echo what everyone else says, your daughter is in good hands and will be just fine.

I have BAV and was diagnosed at age 23. I've likely obviously had this condition since birth like your daughter. I played basketball throughout my childhood and competed playing high school basketball. I didn't know about the BAV at all and it didn't bother me at all. And still doesn't, outside of the ascending aortic aneurysm I have now developed which is in far worse shape than my valve. I was placed under no restrictions when finding out about my BAV.

I'm not a doctor but having lived with BAV I can tell you that overnight the problem will not worsen and you probably don't have to worry about something shockingly bad happening to your daughter on a daily basis. Just keep an eye on it with the echo's as your doctors suggest and if I've learned anything to share with anyone please check for an aneurysm both in the aorta and brain (less likely) on a periodic basis as suggested by your doctors. I'm sure with a baby this young there are no concerns for any of those things developing for a long time, but when I was seeing my GP for my BAV he didn't monitor my aneurysm. People with BAV are sometimes prone to developing aneurysms in the aorta and far less likely sometimes brain aneurysms.

All the best.



UNCGIRL44 said:
Hi all! I somehow managed to stumble on this forum after searching through the medhelp forums on BAV. I gave birth to my beautiful daughter at the end of May, our first child. On our first visit back to the pediatrician, she noticed a murmur....she said it was likely benign, not to worry, but that she was very aggressive with any heart murmurs and referred us to a pediatric cardio for a workup. At that visit I was told she has BAV, but that at this point it is "extremely mild" and we are to come back in 6 months, with visits to be spaced out further after that if all is well. I am pretty sure he said the valve is not an issue (it is only partially fused and some blood does get through, I think), but that she would be monitored for atrial stenosis...forever.

I honestly was just in shock that anything was wrong, but I wasn't overly concerned. I have had MVP since birth, no problems. I didn't have any questions for him because I didn't even have time to digest this information! As soon as I got home I was all over the internet and by the time my husband got home I had cried so hard and for so long my whole face hurt. He thought I was overreacting to this, and said we should schedule a meeting with the cardio with questions. I did that and we will meet with him on July 30th.

So, bascially, I just don't know what in the world to think. What are we dealing with here? I want to get a realistic picture, but I also need to get control of my fears for my daughter. Right now I am so scared! Everything I look at her I practically break down in tears. I don't want her to grow up with me constantly worrying something will happen to her. That is not good for either of us. The cardio said she would be restricted from football and wrestling....likely not an issue for a girl, but being restricted from anything makes me more nervous about the condition.

Am I overreacting? The cardio certainly did not seem concerned. Are there people who live their lives without any issues? Is there anything else I should do? Any specific questions I should ask?

I know this is such a broad post, but any guidance would be helpful. I'm still trying to get a handle on this and not freak out in the process. I'm sure I will have more questions along the way, but for now thank you for any information in advance.
Click to expand...
 
Hi. I am 71 years old and was just diagnosed with BAV this year. I have had an active life. I also have had 4 children. It does not have to be bad. I will need replacement in the future but I am still OK.
 
Thank you all for your encouragement. All of your stories help. I have noticed while reading other posts, the success of those with this surgery and that eases some of my fears. Electlive - I truly appreciate your perspective. My husband said "thanks for making me look bad" lol. We have different ways of looking at things, although I truly appreciate that he wouldn't come down in the pits with me when I wanted him to! :) I know he is just as concerned, but he is more of a "fixer" not so much of a worrier...if that makes sense. He just said, "well if she needs treatment we will make sure she gets the best we can find." His work is associated with the Cleveland Clinic, and although we have never used their services it's nice to know it's available.

Of course, there will always be that part of me that wishes I could take this on myself, rather than my child. On the other hand, I know that everyone has their own burdens in this life. I know that the most difficult things in my life have added a depth I would not have experienced otherwise. Expecting her life to be free of all burdens is not realistic.

I haven't researched enough to know....does this have a link to my MVP? I know other people in my family have murmurs as well. I agree with the idea that my husband and I should be checked out as well. He is not keen on doctors, and comes from a long line of people who are the same, so who knows what is on his side of the family?

It's funny because right after my daughter was born we were originally seeing a different pediatrician. We saw her one time, and I just didn't have a good feeling about it. Nothing wrong, really, just a feeling. So, I researched and ended up with fabulous peds, including one who spotted the murmur right away. I am so thankful for that, and that she can now be monitored as needed.
 
Oh, and I also mean to ask....if we have more children, are they at high risk for this as well?
 
You know, despite all those yearly echo's, I still managed to let my surgery sneak up on me a bit, primarily through a personality somewhat similar to your husband. Maybe it's a guy thing, but I usually don't worry about things until they need to be fixed either...just save my energy to rise to the occasion when the time comes. As it turned out, though, not really the best strategy to have should one happen to be diagnosed with a rapidly growing aortic aneurysm while one's wife is in her third trimester! :eek2: But, oh well, live and learn, and did still manage to "fix" things in the end. Just realize a little better now how at least some degree of worrying (pre-planning) can be equally useful! :thumbup:

The genetics of BAV are somewhat of a puzzle, and only made more challenging by the fact that so many are undiagnosed and/or predated imaging technology. BAV can be prevalent in some families and isolated in others. It very often skips generations. All of my first degree relatives have now had an echo and none have it. However, one of my grandparents died of a heart condition, perhaps not just a run of the mill "heart attack." I've never seen a definitive study proving direct connection between MVP and BAV, but I haven't spent much time looking for it either. What I have seen basically indicated that a connection is possible, perhaps even likely, but it is low incidence and hard to distinguish from "random overlap". In other words, both diseases are very common in the population at large, anywhere from 2% to 5%, so it would be expected that some families would end up having both, even without a direct genetic link.

But back to your family, your daughter may just be an isolated case, like I am, and no reason to automatically consider future children at high risk. My sibling has zero heart problems, as is the case for many with BAV. Now, for those in your family with a murmur, if not previously done, an echo would certainly seem to make reasonable sense. For those without, it's more of a judgment call. Not every BAV is detected by murmur, though. My dad actually never had an echo until my surgery. He probably should have (for precisely the reason you mention), but that was somewhat of a generational thing, and at his age now (late 70s), I was admittedly slightly embarassed sending him off to do it. :redface2: A thorough discussion with the cardio about what's known and unknown in your family history should hopefully give you some better direction.
 
Welcome to the forum!

Last question first. If you have more children, they would be at the same risk as any other child you have. Coin flip. Every time you flip a coin it's 50/50. Now the actual break down is much less then that - but the principal is still the same. Just because first has it doesn't lessen the odds of your second or third. There are studies, but I don't recall the exact numbers. I know of a study either completed or in progress out of Cincinnati Children's that is working on understanding the genetics of BAV. The fact that you have MVP gives your children greater odds of having heart issues. I don't know if your husband has ever had a thorough workup by a cardiologist, but it might be worthwhile just to be sure the gene is only present in one of you.

I was born with BAV (pretty severe murmur and stenosis from infancy), had my valve replaced two days prior to my 18th birthday, then due to an ascending aortic aneurysm I had it replaced along with a graft just prior to my 37th birthday. It'll be three years since my latest OHS this October and 22 years since my 1st this November.

I have five children. My oldest has been diagnosed BAV, however presentation is far more mild than I had. He has no stenosis and no murmur. The second has no issues. The third is questionable, maybe two leaflets partially fused. However all my kids are functionally normal with no formal restrictions at this time. The oldest was an all star on his little league team. We don't encourage football with him and would be quite content if he never showed an interest. That's hard enough on the body even if a person is perfectly healthy.

Just to give you an idea of the varying presentations. I was never permitted to participate in phys ed and was not allowed to participate in any organized sports at all. I had echos every year or six months, depending how I was doing. I had heart cath's at 4, 12, 15, and 17 years old. I recall a couple of stress tests and even wearing a round the clock heart monitor a couple times. But my presentation was far more severe. I had both narrowing (stenosis) and regurgitation (murmur) from birth. All the monitoring was done because my parents found a cardiologist that would take the approach they favored, which was to limit the number of surgeries and try to put off any until I was done growing.

In hind sight, I almost wish I would have had some intervention earlier that would have lifted the restrictions. But growing up, I didn't know any better and I still enjoyed my childhood. I can relate to a lot of what ElectLive said. The appointments really were a novelty and I don't remember spending any time worrying about anything. Heck, even finding out my first surgery was coming up, I recall more a feeling of relief than anything. It was about time!

Just be great parents to your daughter. There will come a time you'll hardly think about it beyond the reminder call for that annual cardiology check-up (if they even need to see her that often).

http://www.ncbi.nlm.nih.gov/pubmed/15234422

Here's a link to the Cinci Children's study abstract. Dr. Woody Benson has been very active in researching the genetics of congenital heart defects. Clicking on his name will link several other studies.
 
My surgeon and cardio said this year that there is no direct heriditary link been proven statistically or genetically for bicuspid valves. They said there is some work that shows it may "run in 'some' families" but there is nothing definitive. My son's internist and daughter's pediatrician saw no need to order any test when told I had a BAV.
 
Interesting stories you guys have. It drives me nuts thinking about the possibilities. My husband feels it's no different than anything else, that life is inherently uncertain....and that something you worry about your whole life may not ultimately be of any consequence. He is right. And yet, it is SO SO difficult when it is your child. I don't think it should be something to keep us from having more children, but it does worry me.

Thank you for your responses, you are all very kind. I will look into the mended little hearts website as well.
 
Your husband is right, we all have some or the other problems, this is one of them. Most important thing is it can be fixed anytime if needed, so you have a great time with your kid and have the regular checks done...
 
Hi

I was born with a bav and it was diagnosed shortly after birth. When I was younger I never even thought of it as a problem in fact it used to annoy me that my mum was always a little over protective, as mothers are. I was always fit and active and apart from tiring easy it hasn't been an issue till now.

My mum had 3 other kids and none of them have any cardiac issues and neither does my daughter. When I got pregnant my ob did extra scans on her heart to be on the safe side but didn't think she was at any greater risk due to my history.
 
UNCGIRL44 said:
Oh, and I also mean to ask....if we have more children, are they at high risk for this as well?
Click to expand...
I didn't read all of the replies so my comments may have been covered. There are a lot of yet "unknowns" about bicuspid valves related to causes and genetics and severity, etc., and there are even different types of bicuspid valves. Some people actually only have two "cusps," while some have all three but two are fused together -- and sometimes this is evident at birth but sometimes this may not develop until sometime later in life -- and there are a few members here who actually had four "cusps," and occasionally a member is found to be a unicuspid! Sometimes a bicuspid diagnosis is related to other genetic issues, Turners or Marfans, but sometimes not. Sometimes there are other related genetic heart structural issues, such as a "coarctation of the aorta," and even those can vary in severity. Sometimes there may be other connective tissue problems and aneurysms can develop.

My bicuspid valve was discovered at birth and my doctors wouldn't let me participate in school gym classes or run at recess (just try to keep a cheerful little kid from running during recess :wink2: ) and while I was a relatively healthy little kid, I don't think I've ever had great endurance. I didn't need my first surgery until I was 17 but my doctor at that time was horrified that my coarctation hadn't been corrected earlier. Then as a newly engaged woman I was told I shouldn't have children, because of the danger to me. I had two successful pregnancies but slept a great deal through both pregnancies. I have two healthy (now grown) sons who have never been diagnosed with heart issues and a wonderful little grandchild who is also healthy. None of my extended family has ever been diagnosed with bicuspid disease though there are others in my extended family who have needed valve replacement in their 70's. My valve didn't need replaced until I was 42, though it was in a very bad state at that time.

But there are other members here who have members in their family also diagnosed with some form of bicuspid disease.

One thing I have found over the years is that there are cardios who seem to know and care about their patients with genetic issues but unfortunately there are some who don't seem to know or care. If your instincts raise red flags about a doctor, try to talk with him/her about it, and if the red flags continue, you may want to look for a more experienced or more caring doctor.

Also, I've nearly always walked a lot and I think that has helped me over the years.

Best wishes :)
 
You are all so kind to share your stories! If I only had what I read on the internet, I think I would still be very depressed about this diagnosis. I go between being thankful it's not something worse, to still being terribly upset with all the possibilities. I just have to keep reminding myself that 1. At least we know about it and can monitor it...and 2. It can be fixed if needed. I try to just focus on that. On bad days I just wonder how in the world I will do as she gets older and starts running around and being a rough and tumble little kid. Her cardiologist just said no football or wrestling.....but soccer, running? Those are okay? And even if they are, I'm sure on the inside I'll still be a nervous wreck.

I have to admit the aortic dissection thing just freaks me out. Even just knowing she is higher risk for that makes me sick to my stomach. I haven't decided about the cardiologist yet. When I was asking my questions I just felt like he wanted to say "it's no big deal!" ....and he just kept telling me her heart is functioning just fine, no worries. We will monitor it. Ugh...that should make me feel better. I don't know why it doesn't.

Hopefully I can just make peace with this diagnosis soon. Not sure yet what makes this any different than the many other diseases that require lifelong monitoring and can be life threatening. Take diabetes for example. And yet, for some reason this seems so much worse than diabetes....WHY is that???

I realize control is just an illusion, and that absent a diagnosis there are still a million horrible things that can happen to a person. Anyway, I'm rambling. I still haven't gotten over my case of the "new mom brain" yet :)
 
UNCGIRL44 said:
I haven't decided about the cardiologist yet. When I was asking my questions I just felt like he wanted to say "it's no big deal!" ....and he just kept telling me her heart is functioning just fine, no worries. We will monitor it. Ugh...that should make me feel better. I don't know why it doesn't.
Click to expand...

Finding a cardiologist who you can be comfortable with is important. You clearly want someone who you know actually cares about your daughter, but not someone who's going to cause undue concern. That's a tough one.

When I was little, we saw several who would talk about operating sooner than later. Some as early as 12 years old. My parents weren't comfortable with that (we're also talking in the 1970's and early 1980's when tissue valves weren't much of an option). They shopped around and found someone who made them feel okay about waiting and monitoring closely. As a result, we were able to get almost to my adult size before replacing the valve, which has minimized the need for re-ops.

The first guy we saw with our oldest wanted to put him on lock down right away as far as activities. Knowing his background (for example, not into sports at all - we asked directly if he ever did any sports growing up) we concluded it wasn't any big deal for him to take those activities away from a kid because he wouldn't miss them. I also knew what my situation was like growing up and comparatively my son's was far more mild (functionally normal at this time). We switched to a cardiologist that we knew was an avid runner. He's taken a much more relaxed approach of monitoring with no real restrictions at this time. Now he's not a fan of roller-coasters so I can't get him to make my wife comfortable with allowing that for our son - but that a discussion I don't want to "win" and be wrong.

As far as football and wrestling - those are typically limited because of the isometric nature of the training and the sport. Lots of lifting and strain. Whereas soccer is more running around and more cardiovascular. When you're lifting and straining, you're increasing blood pressure, which is what the concern is in those types of activities.
 
We made sure to have an echo a month after Braxton was born, since I was concerned since I have a mitral valve replacement.. and they found he has a BAV. He has an echo once a year, but so far they say he's going fine, he's 4 yrs old now. I have 2 month old twin girls (all 3 of my kids were born by surrogate), and my girls have not had an echo yet. I'm praying that they don't have any bad diagnosis.. I don't know how I could handle that.. I read that for women who have congenital heart defects, they have an 8 in 100 chance of their children having a heart defect..
I'm at peace at this thinking that by the time my son needs a replacement or repair (since by the looks of what goes on these boards, he will), that technology will provide him with an even better option than what is provided now for valve patients..
 
Roller Coasters? Well that stinks. I have always loved those! Kristen - I am so glad your son is doing well. I hope and pray that my daughter's course is more mild and doesn't need intervention until later. Our cardiologist said he thought she wouldn't have issues (if any) until 30s or 40s, but after reading on this site I figure maybe that was just based on the average age someone starts having issues...it doesn't really seem predictable who will need surgery/who want, when, etc.

I find it interesting that everywhere you read, 1-2% of the population has this. At first that seems like not many at all....but 1 out of 50? That seems like a lot to me. Especially to have never even heard of someone having this. I keep thinking about my High School (I am far removed from High School LOL BUT...) and the fact that there were about 2000 people. So, roughly 20-40 people with BAV? That just doesn't seem right, but then again maybe a lot of people just never know they have it?

And one more question. Our cardio said that based on his experience, it gets very hard (it was hard the first time) to get a good echo on a baby. He added that they could check by EKG and he would notice any changes....and that we would go back to doing echos when she was a little older. I'm not sure about that? For many years he was the director of imaging, echos, etc. (I think it's called something else but I can't think of it now) for pediatric cardiology at a teaching hospital. Does that sound right?

For now I'm trying not to worry too much. I would hate to think if she had surgery in her 30s or 40s that I had spent all of those years worrying so much. We will just make sure it's always monitored and take action if we need to.
 
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