Outlook of Son with CoA/BAV

[Glen Swan]

Thanks!

I don't look at this as something that will hinder or hold him back. I think it's more about the pain and stress he may have to go through that's beyond his control. Sure, that applies to almost everyone, but as a parent, you hate to see that happen. I've personally never had a surgery outside of wisdom teeth removal. I can't even imagine what OHS would be like, but I know it's not something easily done no matter how great the success rate is for everyone. So, it's just the grief of knowing that one day, he might have to go through that.

Anyways, we will get through it together if that's the case anyways. I have no doubt my son will enjoy life and life a very healthy one.


Cheers!

 

[camgough]

I wish you all well. My dad is adopted, but my mom's side has heart abnormalities, so who knows. I had several checkups, but an EKG showed my Right Bundle Branch Block, which led to an Echo test, and that found my BAV/ Aneurysm.....no symptoms, no murmur.

 

[Glen Swan]

Figured I would toss an update on my son.

A few months ago, my son had his 2 year checkup. His CoA repair looks great and his BAV has not changed, just turbulent blood flow that was noted as normal for most BAV patients due to the design of the bicuspid. So, this is the point when renarrowing of the CoA typically shows it's head if not later on in life (which is a lower percentage from what we hear).

His blood pressure still looks great and his activity is also great. He shows zero signs of having any type of defect outside of just being small for his age. But, I am small and we are pretty sure that's from me.

Due to all this good news, he has been moved to a yearly checkup rather than every 6 months, which makes us very happy. So, here is to the next years of his life being good ones.

 

[epstns]

Wow! He DOES look like a Happy Camper, and I'll bet mom and dad are, too.

Hope the next 100 years go just as well.

 

[Glen Swan]

Thanks! We sure are happy that everything is going great *knocks on wood*

We are coming up on our yearly checkup this December to follow his BaV progress. I think this will still be a bit scary for us, but hopefully after this one, we will come to understand that these yearly checkups are completely normal due to the BaV care.

He is growing up so fast.

 

[AZ Don]

Glad your son is doing so well.

I needed surgery for an aortic aneurysm so was given the choice to spare my Bicuspid valve or to have it replaced. The Dr. told me I had a roughly 50% chance of requiring an intervention for my valve, probably by the time I'm 70. From reviewing the literature the probabilities seemed to be all over the place, from 30% chance of requiring an intervention to 70% chance, so I figured my Dr's estimate was as good as any. I chose to keep my valve and take the 50% chance that nothing more would ever be needed. My impression is that if intervention is required it is generally later in life though of course there are exceptions. Other than annual checkups with a Cardiologist it will probably be a long time before your son requires anything more. If that happens it is difficult to imagine how far the interventions will have progressed by then.

 

[UNCGIRL44]

Hi Glen,
I am pretty new around here. I don't have anywhere near the knowledge of most of these fine people, but i just wanted to let you know that I also have a small child with BAV. That is the reason I found the forum!

Anyway typical story....her pediatrician found a murmur. Luckily our pediatrician is very aggressive with murmurs. She referred to a cardio right then. For us it is just BAV...no regurgitation. ..no stenosis. She will be watched annually.

I second the person who mentioned to get yourself checked. I had palpitations during my second pregnancy. My echo found a BAV! I was always told MVP, and I had a murmur as a baby. It was not recognized until 33 years later. At this time I have no regurgitation and no stenosis, but some thickening to of the leaflets. I will be watched annually now. I am also having my 7 week daughter screened. Even if she is BAV free, I still think I will push for at least monitoring if her aorta.

Anyway, all that to say you just never know. I've gone a pretty long time not even knowing about it. While that is nice, I am thankful daughter will be monitored. Either way it's there, right!? I figure it's better to know about it. I am sure your son will do fine. I know many people who have had worse medical ailments. Even people with diabetes and other common health issues have worse outcomes and still it's something about the heart that just adds that extra fear. Enjoy that precious boy of yours!

 

[UNCGIRL44]

Meant to add. My daughter is 27 months. My younger daughter is 7 weeks! You can fine my old post I'm sure.

 

[cldlhd]

First I want to say I feel for you, ever since my diagnosis in March the one thing I've said is that better me than my son but it sounds like yours is in good hands. I would say it's difficult to predict whether or when the BAV will cause him problems. I'm 45 and my BAV has no stenosis and minimal leakage. My only problem is the ascending aneurysm . I'm sure there are people who live to be 90 and never know they even have a BAV.

 

[Richie Rich]

I read an article which stated that one third of people with BAV will need surgery and on average it happens in the late 50s. It's possible he will never need surgery but if he does it may well be much later in life, many people don't even realise they have it atall. Knowing about it & monitoring it as well as taking precautions with antibiotics for any procedures minimises the possibility of any complications.

 

[Lisa2]

Hi, Glen. I'm glad you found out now so that your little guy can be followed. I come from a BAV family - my Mom, my uncle, my brother and myself. My brother had OHS starting at age 3. I was 31 when I had my surgery and my uncle was in his mid-fifties when he had his valve replaced. My Mom is in her sixties and is still in the waiting room. She has not needed surgical intervention. There is just no answer, or at least not yet, as to why one person's valve fails and another's doesn't. Take care. Lisa