Outlook of Son with CoA/BAV

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Glen Swan

Active member
Joined
Feb 21, 2012
Messages
31
Location
Raleigh, NC
Hello!

My wife gave birth to my first baby boy on January 25th, 2012 and was diagnosed with Coarctation of the Aorta and Bicuspid Aortic Valve 10 days later after hearing a small heart murmur during his first checkups. We checked into a top children's hospital after the echo and had the surgery to repair the narrowing in his aorta (CoA) soon therefore after with great success (4 hour operation, but told it only takes them about 20 minutes to snip up his narrowing and patch up the Aorta with no OHS!).

As new parents, this is pretty scary to be told that your son has two heart defects that need to be addressed. Learning more about Coarctation of the Aorta, I discovered it's highly fixable with a 98% or so success rate where those who have it repaired live long and healthy lives with little to no issues other than the complications of re-narrowing again or rare serious things (etc).

However, I feel kind of disappointed after reading up on the second defect that seems to have a 50% chance with all CoV babies, the Bicuspid Aortic Valve. Having not been told much about this by the docs because they were so focused on the CoA, I've discovered that BAV seems to cause issues as soon at age 20 to as late as ages 60. Although there is some time to worry about that later, I'm pretty sad that no one explained that eventually, my son may need OHS for this defect.

Now, I know there is good success rates out there for BAV surgeries and many people, especially in this community, have been the proof of that success. But, that doesn't stop me from wondering about the chances of complications with those with BAV? Does anyone have any statistics or resources that points to the chances that BAV will cause complications? I can't find much on the subject like if BAV has a 80% chance to cause complications sometime in your life and etc. All we were told by the docs is "may" cause issues later on, but nothing major to worry about now (vague answer to obviously keep us calm and focused on the issue they were fixing).

I can find little documentation on the percentages other than typical ages when complications become present and other resources that it's almost 100% that my son will have complications eventually. Any insight would be helpful, especially as we grow in knowledge with our son to keep him safe as well ready for anything thrown his way.


Thanks!
 
Well, I see I found an old thread in the forums here that covers the reason of limited statistics is because BAV is not normally detected until complications happen. I guess that would make sense if people are walking around not knowing they have BAV or not. We obviously wouldn't have found BAV if it wasn't for the CoA.
 
Hi Glenn Welcome, Sorry to hear about your baby, but glad he had a good doctor that didnt just blow off the murmur but sent him for testing so he had the surgery before things got really bad.
I see you pretty much found the answer to main question your self and that they probably didnt say much more than they did because they dont know that much and most of the BAV that you do read studies about are the ones that had their problems detected as an adult and not a large group of adults who had COarc repairs as a baby, who will have check up their whole life and IF things get worse, they will know for a while so they can do surgery before there is permanent damage.
The again, speaking as the parents of a young adult whose had alot of heart surgeries, One of the other problems, guessing the future is you cant even compare how a child that is born now futre looks based on kids that had THEIR surgery as a baby or young child born 20-30 years ago since everything is so much better now, and who knows how much better things will even be 10 years from now let alone 30 IF he does end up needing another surgery.
Honestly and I KNOW it is very hard, the best advice I can give is live for the day, enjoy your baby and knowing the fact he now has a very good chance of not only making it to kindergarden, which he ight not have had if they didnt find his cooarc, but even going thru high school and college without running into any other problems beside needing to go for checkups early. I'm not saying ignore his heart, and I certainly believe its best to keep up with the latest research and surgeries etc so you never are blind sided and have to make decisions without really knowing everything available or what seems to be the best but its really easy to drive your self nuts and not enjoy now, worrying about what MIGHT happen.

There aren't that many parents of young children or babies here, so you might want to also check out orgs/site that are mainy focused on families whos children have gone thru one or more heart surgery. on of the best sites I know that has alot of info as well as really good online support groups is The Congenital heart Information http://tchin.org/community/index.htm
 
Thanks for the response!

I think having the benefit of knowing he has BAV as a newborn is a good thing. He will have to have regular checkups for the rest of his life due to the CoA. That means, based on what I've researched, he may actually have a good shot at repair as opposed to finding out his valve needs to be replaced if he didn't know he had it. But, who knows, he may never need it replaced or run into any complications. Regardless, I'm pretty hopeful that today's advancements will keep him living for a very long time. Having the benefit of being born in 2012 gives him the benefit of taking advantage of new tech 20, 30 maybe even 50 years down the road.

Cheers!
 
Hi Glen,
Im and 18 year old CHD'er (see signature) and had 5 ops, 4 OHS so far, waiting for number 6.
So pleased to hear they caught your son's CHD early and his op went well :)
CHD's effect every single person differently, as do most things, even if they have the same name, your son will not react in the exact same way as some one else with BAV/ CoA,
Now a days they are managing to do valve replacments without the need for OHS, so IF your son needs his BAV replaced, hopefully by that time transcathetar valve replacements will be common practice :)
Welcome to the boards :)
Love Sarah xxxx
 
Thanks for the response!

I think having the benefit of knowing he has BAV as a newborn is a good thing. He will have to have regular checkups for the rest of his life due to the CoA. That means, based on what I've researched, he may actually have a good shot at repair as opposed to finding out his valve needs to be replaced if he didn't know he had it. But, who knows, he may never need it replaced or run into any complications. Regardless, I'm pretty hopeful that today's advancements will keep him living for a very long time. Having the benefit of being born in 2012 gives him the benefit of taking advantage of new tech 20, 30 maybe even 50 years down the road.

Cheers!

It really is an amazing era to live in and the advances are coming so fast http://swo.ctv.ca/?video=624202 open link and WAIT for ad to finnish
 
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My neighbor's 12 year old was born with heart issues. She has a tissue valve and pacemaker. There may have been other complications that I am unaware of. G. had surgery at less than 1 week old. She just had her first pacemaker replaced.
She's happy and healthy, loves to play soccer and bike.
Sounds like your son has a good shot at a similar outcome! Best wishes.
 
It really is an amazing era to live in and the advances are coming so fast http://swo.ctv.ca/?video=624202 open link and WAIT for ad to finnish

Yeah, that is pretty awesome, especially the need to not have OHS for valve repairs outside of the ones they do already like with my son. But, I guess only time will tell and my son has plenty of time before that point in his life IF he needs it.

Right now, my son is doing great and doesn't seem to be impacted by his surgery other than his voice sounding somewhat sqeeky due to the tubes put in his throat or where the repair was made (beside his vocal chord nerves). Then the only meds he takes is something for high blood pressure until his body adjusts to the new increased blood flow from the aorta being open as opposed to narrow.

Cheers!
 
I think BAV with CoA has recommendations for periodic brain scans as there seems to be a higher correlation of brain aneurysms occuring in people with BAV and CoA. So you might want to ask about recommended intervals for having scans done.
 
Yeah, it's because I believe of the high blood pressure and weakening of the walls. CoA causes high blood pressure before and after the repair. Some don't actually have high blood pressure after the repair too, but commonly it happens. My son has high blood pressure, but takes meds once a day to control it. Once a day is the lowest where some have had to take stronger and up to 3 times a day. Eventually, he should ween off the meds because his body hopefully will adjust to the increase blood flow.

From my understanding, it's not common, but it can happen, especially if his condition has other issues like continued hypertension, re-narrowing and weaken walls.
 
Sorry to hear about your son.

It sounds like your son was diagnosed with the same thing my step son had, but with a much better outcome. My step son had a balloon vavuloplasty (I think) at 9 days old, but it went completely wrong and wrecked his mitral valve, which after open heart surgery at 15 days was repaired. Then it blew out due (they think) to the administration of the wrong drugs by a nurse. He was kept barely alive (comatose) until he was about 4.5 months old (many infections), and they finally gave him a prosthetic mitral valve. He went on to be a healthy kid, except for hearing loss because of the antibiotics. Notice that none of the original issue (aortic stenosis and coarctation) has been dealt with.

Fast forward to 12.5 years old, and the prosthetic mitral valve he had was too small and they decided to replace it. Given that they had to do open heart surgery on him, the surgeon decided to replace his aortic valve at the same time. They also replaced a piece of his ascending aorta which had become an aneurism (about 5cm in diameter).


I’m sorry that you have to go through this, but I’m very glad that you know what you are dealing with. For my step-son, it means that he has had to have follow-up appointments with the cardiologist on a regular basis (6 months) since he was born. At these appointments he has an EKG and an Echo test (ultrasound). This is simply to monitor the stenosis and function of the valve. It also works (in theory) to monitor if there is any aneurism developing in the ascending aorta, which is fairly common in people with aortic stenosis. At around 10yo, Skyler’s cardiologist also starts a type of stress test where he puts the person on an exercise bike, gets them to elevate their heart rate to a certain level, and measures the peak oxygen and CO2 levels in the blood. This probably depends on the cardiologist, facilities, and heart issue, though.

The thing is that if Skyler didn’t require his mitral valve replaced, he may have waited longer before his surgery.

In terms of what limits Skyler, personally, I believe that his mental state of wanting to be “special” and have “special treatment because of his heart” is what limits him the most. Yes he had a heart problem, and yes his blood flow wasn’t great before his surgery, but he had been trained from an early age not to exert himself. I have honestly never seen him try at anything physical that he didn’t feel like doing “My chest hurts” after 10 steps on the soccer field. Yet he would play street hockey for hours on end…

Since his surgery (and being told by his surgeon that he has no more excuses – he’s normal now – he’s been trying a lot harder at everything, and his concentration has improved in all aspects of his life. Is it due to his surgery, or being told he no longer has an excuse, I don’t know for sure. I suspect it has more to do with the latter.

So, personally, I think your son is lucky to know that he has an issue that needs to be followed, and that he may need surgery later in life. However, in the meantime, he has absolutely no reason to be treated like every other normal kid. Love him to bits. And when the time comes that he needs you because of heart issues, be there for him. In the meantime, do your best not to worry about him.
 
Thanks for the replies.

My son had his followup the other day. They did a full echo and whatnot again to check everything out since the surgical repair of his narrowed aorta. Everything looks great on his aorta, but they noticed his BAV may be slightly tighter than the last echos and etc. It's nothing to be alarmed about yet, but obviously something to be aware of as he grows. This could mean that he may need to have the balloon procedure to widen it up sooner rather than later. But, we will see in time and how it progresses right now.

I'm not too worried right now because at least they know about it sooner rather than later. If it becomes more narrow over time, they can just balloon it up until they feel it's time for something else like a surgical repair or replacement. Speaking on replacement, I did ask the doc about what's going on now-a-days. He mentioned that in kids, they normally opt for tissue, especially with taking another valve inside your body (forget the name) and using that instead of pig/cow or mechanicals at early ages. That way you can stay off blood thinners and the valve can grow with the child. It's not a fix-all, but at least it's a good option until, if any, another surgery is needed to replace the valve.

Interesting enough, he mentioned that pig valves are weaving out now. Cows have better overall results, but mechanicals obviously have the greater duration in terms of further procedures. The best bet is to stick to something that has less complications and harder management (like taking blood thinners). Regardless, the outcome is still good and if it comes to that, we will take it one step at a time with our son.

So, here's to hoping for the best. The next 3 months will be caution for us because his body could still have complications with the aorta repair, but everything is looking good right now. He is gaining weight and even starting to smile when he is happy or enjoying our company.

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Cheers!
 
Good to see your son is doing well. Two thirds of the time, someone with BAV will go their entire life without needing surgery. So the odds should be in his favor of never needing valve replacement at all. Even if it does come to that, chances are he'd be in his fourties or fifties by then and valve replacement may surely be much better than it is now. And if not, the conditions now aren't all that bad really.
 
Hey Glen,
I had my coarctation aorta repaired when I was 11 (1979 - the Dark Ages). I have a scar running from under my left breast to the middle of my back. Your little boy is really lucky that they caught it so early - they didn't find mine 'til I was 3 and just watched it for years.
I lived with my BAV from birth until last year (aged 42) perfectly well. And am doing very well since the surgery.
Enjoy your little boy and I'd also recommend keeping in touch with a support group for families of kids with heart issues.
Good luck :)
 
Glenn,
I am a male aged 72.
I had my coarctation repaired at age 13. That was in 1953 back when this type of heart repair was still a new thing.My blood pressure gradually fell to near normal levels after several years. I later learned at age 40 that I had a bicuspid valve but no problems until at age 65 when it became calcified and had a St Jude's mechanical valve installed. So it took my body 65 years to want a new valve. My surgeon said coarctation repair looked fine after all these years. I fully expect that your son will have a healthy valve for many,many years.

Zach
 
Awesome!

That's what we are hoping for, but we are ready for anything. I'm pretty hopeful for the future regardless of valve replacement or not. :)
 
Hi Glen,
I am glad to see your boy is doing well. I wasn't diagnosed with BAV until 30 years old, and had surgery 6 weeks later because of an anweurysn on 6.7cm in the ascending aorta. That being said I have a 2 yr old and 1 week old sons. Because of me, both are at risk of BAV. I am wondering if you and your wife and family have been checked for BAV? It is often genetic, and better safe than sorry for you and others. I wish you and your family luck!
Cam
 
Hi Glen,
I am glad to see your boy is doing well. I wasn't diagnosed with BAV until 30 years old, and had surgery 6 weeks later because of an anweurysn on 6.7cm in the ascending aorta. That being said I have a 2 yr old and 1 week old sons. Because of me, both are at risk of BAV. I am wondering if you and your wife and family have been checked for BAV? It is often genetic, and better safe than sorry for you and others. I wish you and your family luck!
Cam

We can't to some extent. My father's side has been clear of heart issues, with my father having none and his father pushing 80 with no issues with his father the same etc. My mother's side is up in the air as she didn't know her family and seems adopted. My wife is the same being adopted from birth as well. She has some family records, but they don't point anywhere good as they were young parents. But for all I know, I have BAV too. I'm almost 30 and having no issues other than the typical smoker issues. The last time I had a checkup was last year for chest and lung pain. The doctor did check my air levels, blood pressure and listened to my chest, lungs and heart. Everything was good to go, oxygen and everything looked good, so I guess my smoking is not killing me yet. I checked out with an upper resp infection. I would assume if I had something in need of attention, it would have shown a clear sign, but you know, that doesn't rule me out completely.

My wife believes it's from her side, but who knows. I kind of okies with it being a mystery right now because my wife is upset that it's her fault or something (also because my son takes more after her looks and etc). So, we will just leave it at that. Regardless, the docs said it could just be how the baby was developed and not just something running in the family that skipped a generation. I'm hoping it's something like that and also something I hope he doesn't pass down to his kids when that time comes.
 
I would assume if I had something in need of attention, it would have shown a clear sign, but you know, that doesn't rule me out completely.

Glen - The hereditary nature of BAV is very much undefined and can be hard to track in any family. Sometimes it skips a generation, sometimes it doesn't, sometimes it happens completely at random, or at least it appears that way. Even with good knowledge of previous generations, there can be family members that have/had BAV and never knew it. Finally, a stethoscope, an experienced doctor, and a good set of ears may still not be enough to diagnose BAV. An echo is really the only way to completely rule out.

I do know what you mean about your wife thinking about how it happened, who's at fault. My wife and I both had a different hereditary condition that could have been passed on to our children. But I look at it this way: I was diagnosed with BAV at birth and have been Type I diabetic since age 8 and never once in my life have I thought it was anyone's fault. Never once in my life have I thought my life could have been better. When you grow up with a disease as a kid, it's a part of who you are, it's normal. It's usually those who are diagnosed as adults that are asking "Why me?".

Best wishes to your son, you, and your family. My younger girl was that size a year ago and she's climbing slides and ladders now, running all over the place, and already telling me what to do. I look forward to hearing similar stories about your son next year too.
 
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