Children inheriting congenital heart problems

[surfsparky]

Hi,
Just wondering if it is recommended (or not recommended) to have children tested for congenital valve problems. Chris (my husband) was born with a bicuspid aortic valve, and although our cardio has said that it is a possiblity that our children could be born with the same thing, he doesn't recommend us testing our children to see if they have "taken after their dad"! His reason is that it would just create worry and stress, particularly if the child has no symptoms of regurgitation as this early age (Noah is 5, and Sienna is 2). Anyone have any thoughts on this? I understand the cardio's view, but I'm concerned that by not knowing, could we be exposing potential risks to our kids (eg. when visiting the dentist and not protecting adequately against infection) if they too have a bicuspid valve? I'm not sure whether to seek another medical opinion on this or whether to accept our cardio's thoughts. So, I thought I'd consult the best "experts" - the VR.com members.
Thanks,
Yolanda (Chris' wife)

 

[Ross]

Personally I side with your Doctor. There is a very minute chance that the kids have gotten this. So minute that I would think the chances of them getting hit by lightning would be better. Now their children in the future, I would probably want to check them.

 

[bethanne]

I have 4 children and one by one I have had the three oldest tested. My youngest (only boy) is 11 and I have waited till the kids were at least 13-15.

I am hesitant to have my son tested because he has a higher chance to have this than the girls and unless he shows symptoms....

From what I have concluded from other's posts is that those who did not know they had the valve issue tended to be more active growing up and as a result have fared better from being in better health and a stronger heart from being active.

you do bring up a valid point regarding dental cleanings etc. I don't believe I have heard of many endocartis cases in children. That would be something interesting to research...

I am curious to what others have to say about this...

bye the way happy 4th of july

p.s. my son is playing baseball and yesterday he played two games straight (4 hours) as a catcher without a break and we have more games today
he is a very healthy active boy and I am a proud mom....

 

[atydev]

I just went through this

I just went through this

I had mitral valve regurg. I got endocridites last year and on June 21st of this year I had my mitral and aortic valve replaced and I also have HOCM (a thickening of the heart muscle). This all is inherited. I chose to have my children tested and just days ago I got the call my 13 yr old has mitral valve regurg. The HOCM has not shown up but I was told to continue to watch for it. I of course was devistated but I am glad to know so that I can medicate him and take caution. Endocridites is no joke and can be fatel. I wanted to know. Although I am not going to let this prevent him from having an active life. No way he will still be a boy. I find more comfort knowing that I can have a heads up on this condition. I was 28 before I found out I had it. It changed nothing for me. Matter of fact I felt since I had no symptoms nothing was wrong and I took a "whatever" attitude and look where it got me. I did not take the prevention that I should have cause no one told me what could happen if I did not take care of my self. I feel better knowing for me it is the not knowing that is hard. This is just how I feel and you have to decide for yourself. Best of Luck and God bless your children that they are free of this condition.

 

[Mary]

Yolanda,
One of my boys also has a bicuspid aortic valve, but I only pushed for the echo this year since he was getting ready to graduate from high school.
My cardiologist says that latest studies show there is a correlation; former cardiologist said there was none. I personally think there is and only an idiot would dismiss the possibility, but former cardio also dismissed my TIA's, so there's the proof of his idiocy!
However, I wouldn't have an echo run on your children at this early age. I would insist upon strep tests being run on iffy sore throats so an antibiotic could be prescribed if positive. That can be a battle in and of itself.
But you should do whatever you feel is necessary for your peace of mind. If you feel strongly and want to know, see about having an echo run. It's your call, so don't let anyone else dismiss your concerns.
Mary

 

[vlamus]

Please have your children evaluated. My mother, sister and I were diagnosed with bicuspid aortic valves...and from my experience and understanding it does run in families! Of course I am not a medical doctor, but I think anyone with children needs to have a serious discussion with the Pediatrican about a cardiology consult for at least a baseline Echo. I was also born with another congenital heart defect, which was repaired as a child, so I have known of my condition for sometime and continue to monitor the aortic valve. Knowing about my heart defects has never, ever kept me from being as active as possible. Just treat your kids normally and follow doctors guidelines for activity. My mother (not knowing she had a bad valve) got sick so fast when her valve became stenosed she was immediately sent to surgery and had a great outcome. My sister on the other hand never knew about hers until it was too late. An HMO doc was putzing around and blamed her symptoms on a virus. Finally they found the bicuspid valve (echo and cath), which had become stenotic and then her HMO sat on this trying to figure out how surgery would effect "their" bottom line. While she was waiting, she died in her sleep (the valve closed off from autospsy). Had she known sooner about her aortic stenosis, maybe it could have been monitored more closely. She could have had time to seek a second opinion. Come on folks .....is being in the dark better?????

 

[Abbanabba]

Hi Yolanda,

I have to agree with Vlamus on this one.

I'm sure you've had the chance to talk to Grant about the high incidence of inherited bicuspid valve problems in his family. If there is a chance (regardless of how minute) your kids could have problems with their valves, then I think it is better to find out and know for sure. I can't see how knowing will cause you more worry and stress, when you are obviously already worried by NOT knowing. At least if they are given the all clear (which is more than likely) you won't be tourturing yourself wondering! If bicuspid (or other) problems are found, then you know and can take whatever precautions you need.

As far as kids being less active, all I can say is as a child that grew up with a heart condition, I was as every bit as active as I could be (..as a teenager I would ride my bike 17km in to town and back on the weekends..), so I think that really is false logic.

All the best
Anna : )

PS - I've been meaning to email you and let you know I'm moving to your neck of the woods in the next few weeks. I'll get in touch once we're settled and perhaps we can catch up.

A : )

 

[Rain]

Knowledge is power.

Knowledge is power.

We like to refer to this surgery as ?getting hit by a truck?....

If you know the trucks coming, wouldn?t you like the opportunity to get your kid out of the street?

 

[Rebecca]

I lived north of Atlanta. About three years ago four to five young teens died during games or early morning practice. They die of heart disease. If they had known that they had heart disease they would still be here. Last summer and this summer some of the high schools in our area have offer mini echoes for teens that are in sports. They basically measure the heart size and the cost is only $56. I had both of my teens tested and told the tech. that I had a moderate heart murmur. I was in the room when they did the echoes and the tech. also checked their valves which looked fine. On all health forms they asked if heart disease runs in the family. When your children become older I would have their hearts checked.
Rebecca

 

[Harpoon]

I'm one of those "CHD kids" as well....


I've ALWAYS been active. I didn't participate in organized sports much simply because I wouldn't be able to pass the physical required for most sports, however I was never really hindered by my condition or my knowledge of it, in fact, I'd say that in some ways KNOWING what was going on in my chest was a little empowering and definitely a motivation to be active and take care of myself.

My parents kinda lived in fear. They knew I had a pretty serious heart condition, but they never tried to hold me back. They pretty much let me do what I felt comfortable doing and just hoped and prayed nothing would happen.


Nothing did really, not until long after I graduated high school at least.


About two years ago my son's pediatrician mentioned the presence of a heart murmor in my son during a routine physical. Right away I called my cardologist and asked him for an opinion and he said that in young children, such murmors can be common and usually benign. We decided against taking him for a check-up with my cardiologist but I've been mindful of it ever since. The murmor's gone now.


FYI (long story) my son is not biologically mine.


Depending on the child's age, I would have him or her tested if there was a higher than "normal" occurance of congenital heart defects within the family. If parents, grandparents, or siblings presented signs of a defect or possibly died from it, then there's a "better" chance your child might have it too. Keep in mind a lot of deaths in the family may have gone "unexplained" to some degree if they happened 40-50 or more years ago. A lot of "heart attacks" were really deaths from pediatric heart defects that were never discovered.

Look at your family history some. If there's some instances of premature deaths, especially in infants and young children and you or your spouse have a bicuspid valve, DEFINITELY check the kid.


Beyond that, if your child is older (5 and up probably) you might just go ahead and ask them. Explain the situation, that the condition is something that might have been passed on just like "mommy's green eyes" or "daddy's nose" and explain that there's a simple test to check for it.

You might also talk it over with your cardiologist first, posibly ask about a pediatric cardiologist who could talk to you or look at your kid...


It's better to know about these things BEFORE they become an issue than afterwards.

You really don't want to find out your son has a bad heart valve because he collapsed on the field during the third quarter of a high school football game....


By the way, my "big" sport in high school was skateboarding. I had a ramp in my back yard and I was fairly good at the time. I also had a 10 speed street bike I pedaled around for maybe 15 miles a night every night through the summer. The thing was stuck in 10th gear and I worked hard on it.

My endurance was never as good as other kids my age, but it got better as I worked on it and I was faster and stronger than my heart healthy brother. He could run longer distances though and he could pass the physical so he was on the track team, pole vaulting of all things!

 

[tommy]

On a practical note...........Buy some life insurance before you do any testing. As we all know, once you have a heart diagnosis, insurance is a problem.

 

[gijanet]

I second Tom's note.

I second Tom's note.

Katie has been turned down by five life insurance companies thus far. Not to be morbid, I just simply wanted a grow-up plan for Katie like the one I have for my son through Gerber. No such luck. And just my two cents, yes, I would have them checked - for your peace of mind, if nothing else.

Good luck and prayers that you're worrying for nothing.

 

[Mary]

Thank you Tom and Janet

Thank you Tom and Janet

Tom and Janet, you both included in your posts an issue I am sometimes reluctant to discuss--namely insurance coverage. With the discovery of Paul's (my youngest) bicuspid valve, service in the military was no longer an option. That was fine with me, because I was worried about his undergoing a rigorous boot camp experience, even though he is a long distance runner and does martial arts.
He is covered under our insurance, but when he finishes college, he won't be. I'm worried to death that he will have trouble finding a job with health insurance that will cover him. Obviously, he will be having surgery at some point in his life.
I want his brother, who is 21, to also have an echo. However, he is going to Washington, D.C. next month to interview for the FBI. He has no idea that I have any concerns, and if I wait, he can go with a clear conscience when asked if he has health issues.
Do I feel like a manipulative mother? Yes, but I have learned from my own experience that the diagnosis of a bicuspid aortic valve doesn't necessarily mean one is in imminent danger. I'm trying to buy a little more time for Mark and his employment opportunities. I feel awful, but I think it is prudent.

Nonetheless, Harpoon please heed my advice with your son. My son (Paul) had a murmur through early childhood. We were told not to worry; it would probably resolve itself. Supposedly it did. The last 4-5 years the PCP who is now seeing him (rather than the pediatrician) has heard nothing. I had to really insist that we have the echocardiogram run. Both the doctor and my husband kind of went, "Ok, whatever it takes to shut her up." As it turns out, he has a bicuspid also. So, just because the murmur disappears, you aren't necessarily out of the woods. I know it is less likely in your situation, but don't got lulled into a false sense of security.
Mary

 

[surfsparky]

Thanks all

Thanks all

Thanks everyone for your responses, it's been a great help. I'm still a little undecided about which path to take (to test or not to test), but I have an appointment with our doctor on Monday to talk about it. A huge part of me (and Chris) wants to have Noah and Sienna tested to have the peace of mind that lots of you talked about, but on the other hand, I'm a little prone to worrying, so if either of my children have the bicuspid valve, I don't want to wrap them in cotton wool either. It's great to hear that so many of you who knew you had a heart condition growing up, didn't stop being active and playing sports. I think I'm edging towards the tests and then I would just have to make a conscious effort to allow my kids the most normal of lives (with the occasional worry which is part of a mum's job description!). Noah and Sienna probably have tricuspid valves, but if they don't and something happened that could have been prevented, that would be devastating. Well.....now it seems like I've made up my mind after this bit of therapy writing! I'll let you know how Monday goes.
Yolanda (& Chris)

Bethanne - 2 games straight, I'd be a proud mum too!
April - sorry to hear about your 13 year old son having mitral valve regurgitation, here's hoping and praying that by the time he needs it repaired/replaced, it will be done in a cath lab without the need for open heart surgery
Mary - what are strep tests?
Vlamus - thanks for sharing about your family. How old was your sister when she passed away?
Anna - would be great to catch up when you move down to the heart of Australia, Melbourne (P.S bring your thermals!)
Tom - I hadn't thought about life insurance for kids. I don't think it's a big thing down here, is this what happens over there? You've given me something more to research!
Janet - you're an inspiration, hoping Katie stays well.
Harpoon - your brother may have been heart healthy and been a champion pole vaulter, but I'm sure that the girls would have thought your skate-boarding tricks were much more impressive!

 

[Mary]

Yolanda,
A strep test is a test to detect the presence of the bacterial strep throat in a patient presenting with the sore throat, temperature, etc. Left untreated it can result in rheumatic fever.
In the states, there is a trend to not prescribe antibiotics for routine sore throats because so many of them are viral infections. To diagnosis the strep throat, a culture has to be taken. I've learned to insist upon it not only for myself but for my children.
Perhaps it's different in Australia.
I see where Chris had the Ross procedure. Is he happy with it? I hate to ask you here on this thread, but you have your pm and email disabled on the user site.
Best wishes,
Mary

 

[Georgia]

Anybody know anything about incidence of mitral valve prolapse in children of people who have it? Mine was silent - there was never a click and it was only diagnosed after I started to have other symptoms (tachycardia and arrythmia) when I was 29.

I'm concerned that the same may be true of my kids; altho I guess that since they've just reached the age when I was diagnosed I shouldn't worry too much. My major concern is if they have it, they get covered for dental work.

 

[Martin_W_Riley]

just another opinion

just another opinion

Yolanda;

I'm one of the lucky few who, at 35, survived an aortic disection (7cm tear!) due to an undetected bicuspid valve. The surgeon said the only reason I lived through the ordeal was because I was so very fit! Both my heart and aorta were in great condition (minus the root with the big ugly tear of course!!!).

Had I known all my life that I had a bicuspid valve, perhaps I wouldn't have trained as hard and wouldn't have been as fit - so who knows? Would I have survived anyways? Certainly I wouldn't have lived the life I lived and that would have been a shame. I spent 7 wonderful years in Africa as a kid and was given a university education by the military. Had my valve issues been known, none of that would have happened.

I must say, your question really hit home with me as I too have children - two young boys (4 and 9) and was told that there is a chance (very slim - but one nonetheless) that my boys may have inherited my condition.

The reason the medical community does not encourage you to test your children is due to costs of course. They figure the odds are slim that the condition would be passed on and even slimmer that the child would suffer a medical emergency before they could detect a murmur or something. They also don't want you overprotecting your children to the point of hurting their fitness levels. In Canada, our medical system is public so they are REALLY strict about spending money and waiting periods for tests are measured in months (6 months just to see a cardio here in Nova Scotia!)

That being said, I too think knowing is better that not knowing and I certainly intend to tell my children when they are older that there is a very slim chance they may have a bicuspid valve. I will also make sure every doctor who examines my children listens carefully for murmurs. But for me it ends there, my kids will be treated no different than any other kid on the block! I know what worrying does to my system and wouldn't want them to suffer that as well.

So perhaps my post doesn't answer your question, but know that you are not alone in your concerns for your children.

Good Luck

Martin

 

[Marguerite53]

have been wondering what to do, also

have been wondering what to do, also

Hm. Lots of varied responses. I, too, have been laboring over the idea of having my children echo-ed. My youngest, 16, particularly. She plays volleyball and is suddenly being recruited by Division I schools. She has experienced repeated mild dizzy spells, all during practices or tournaments. She is a light eater (erghh -- teenage obstinance) and has low blood pressure and that is what we've "attributed" it all to, so far. Her physician does not hear a murmur (mine was not detected until my late 20's) and therefore is happy to set up an echo, but will not/can not order one (ie, no insurance coverage).

The bit about health and life insurance is what caught my attention. It is difficult enough to raise children! Why do we have to make decisions about their well-being based on corporate requirements? I can't imagine her going off into the world "uninsurable" because I was trying to detect some potentially dangerous abnormalities. This is very frustrating.

Any insurance people out there who can shed more light on this? I have never been denied coverage with a BAV. I know we took out life insurance after I knew that I had the BAV and I know that I disclosed it. At that time, of course, there was no stenosis and prognosis was that there wouldn't be any until age 70.

Really appreciate everyone's views. Thanks for all the contributions.

Marguerite

 

[Lisa]

Tough question. Tough decision.

My brother was born with a unicuspid aortic valve.His lungs collapsed at birth and he spent weeks in the hospital. The doctors diagnosed him right away. My brother had his first open heart surgery at age 3. Sadly, he passed away during his 4th surgery. I think my Mom still would have wanted to know.

I was born with a bicuspid aortic valve. It was misdiagnosed at birth as a "heart murmur." My life has been completely different from my brother's. I did and do everything I've ever wanted. I had my valve replaced this past March (I'm 31).

One of my uncles has a biscuspid valve. He had his valve replaced in his early fifties.

My mother was diagnosed with a bicuspid aortic valve within the past couple of years. Her aortic valve area is hovering around 1.0 cm2. She's in her early fifties. She keeps joking with me that her valve has to last another 15-20 yrs. so that she can have her valve replaced at the same time I have my 2nd operation. She wants the bed next to mine!

I think I would explore it. Knowledge is good.

 

[Marguerite53]

I think I have to find out

I think I have to find out

Lisa,

How surprising that your mother wasn't diagnosed until she was in her early 50's and yet had children and siblings with the defect!! Are there gross variations in stethescopes or did the reigning physicians all attend too many rock concerts??

Thank you for your post. The "knowledge is good" rings true in my ears and I am leaning toward investigating. To send her off to college 3,000 miles away and not know whether she is "normal" or not (and especially if I am still, which I hope to be, in waiting mode) is more than I can take.

I know my oldest son will want to be checked eventually (on our dollar before he graduates from college next May!!). Both sons, probably ought to be checked given the male/female statistic. I have pretty good insurance and haven't called them yet. I'll check into that.

Thanks! Marguerite