Kido with bicusp aortic valve

[brookspr6]

Jessica, our youngest, will be 7 in January. She recently went through a balloon procedure to open up a bi-cusped aortic valve. She did well. Like procedure on Tuesday back in school on Thursday kinda well!

We have monitored her since birth with echos every 6 months. We have anticipating this would happen; just hoped for later... I was under the impression that once they used the balloon the next procedure would require valve replacement.

But from my understanding, after the procedure, they were able to open the valve without a lot of leakage. Which would imply to me that as time goes on and the valve thickens they might be able to do this procedure again without have to replace the valve.

Does that make sense?
Are there folks with Kido having similar procedures?

Jesssica has CHARGE syndrome which is a cluster of birth defects the heart being one.

 

[hensylee]

Welcome to VR. Yes, we do have members of all ages - from cradle on up. We are a little slack right now due to holidays and folks being on the road, etc. But they'll be back any minute now. There is much to learn here. We are glad you came. Blessins......

 

[kodi]

Sorry I can't answer your questions at all but I want to welcome you to our site. I'm sure some of the others here know a lot about what you're going thru. As a parent, I don't know how all of you deal with your child having birth problems, but my heart goes out to you and all the others that have the same situation.
BTW, she's a cutie. Thanks for posting her picture.

 

[davidfortune]

Repeat balloon valvoplasty is possible. The probability is uknown. They will have to evaluate Jessica's options when the time comes.

Generally, the older the person the less likely a balloon valvoplasty will be an option for the aortic valve (not true for pulmonic valve). The difficulty lies in keeping the balloon in a stable position although they are always improving materials technology and are investigating the use of adenosine to induce transient ventricular standstill (i.e. stop the left ventricle for just a second).

Good luck, glad to hear Jessica is doing well.

David

 

[Nan]

HI and welcome.

I have also read that it is possible to have a repeat balloon valvoplasty. And the good news is that at her age, by the time she needs another one, they will probably have even better materials and techniques.

Glad she did so well. She is a cutie.

 

[aussigal]

Just wanted to say WELCOME...
Jessica is a gorgeous little champion...its good to hear she did so well with the procedure...
Two of my 3 sons have a BAV but they havent needed any intervention...we are very lucky...
I have never come across CHARGE syndrome before...'spose I better look it up.
Welcome to our family...

 

[Mary]

There's a member on the site named Clouddancer22 whose daughter shares a similar medical background. I just looked at Clouddancer22's information, and she hasn't been on the site since last April. However, there's a way to send her a email, by using her profile information. You might want to try that.

I have/had a bicuspid aortic valve which was replaced in May, 2005. Our youngest son also has one, but he has had no problems with his at this time.

I hope Jessica continues to do well after the procedure, and I would also like to welcome you to VR.

 

[Meghan]

I'm not sure how similar the balloon procedures are for aortic and mitral valves, but my husband was born with severe mitral stenosis (as part of a collection of congenital heart conditions). When he was 7 they stretched/'tore' open the mitral valve with a balloon. The results of the repair were amazing and the repair has now lasted almost 20 years; a stress echo in July confirmed good mitral valve functioning. So we're not looking at replacing the mitral valve when he has surgery to replace an ascending aortic aneuyrsm in the near future. Best of luck to Jessica and her family.

Meghan

 

[francie12]

What a sweet looking little girl! I just wanted to add my congratulations on the successful procedure. Your logic sounds good to me about a possible repeat. What does your doctor say about it? The technology for solving valve problems seems to be coming on faster as time passes. Let us hope that by the time our young ones need something (valvoplasty, replacement, aneurysm repair, etc....), it will be much improved from what is available now--and now isn't so bad. Wishing you the best of luck!

 

[1tree1975]

new

new

Hi everyone...I am new here and am glad to be able to join you all.
My son has aortic stenosis..critical at birth and now happily sitting at a mild level of stenosis...he also has a bicuspid valve. Kristopher is almost 3 years old. I just wanted to let the original poster know that basically valvuloplastys can be done for as long as that valve does not become too damaged(regurgitation). Kris had his 1st when he was 3 days old and again this past July. Thankfully only minimal regurgitation was created from both...so we will continue on this path until it is no longer effective and then a valve replacement will be required...hopefully in the far off future...but there is no crystal ball with these guys..too bad!
Well he is a ball of fire none the less and one would not know any different to look at him. A 36 pound and 37 inch 3 year old!
glad to chat with you all and I look forward to many postings and discussions!
Theresa

 

[Mary]

Hi everyone...I am new here and am glad to be able to join you all.
My son has aortic stenosis..critical at birth and now happily sitting at a mild level of stenosis...he also has a bicuspid valve. Kristopher is almost 3 years old. I just wanted to let the original poster know that basically valvuloplastys can be done for as long as that valve does not become too damaged(regurgitation). Kris had his 1st when he was 3 days old and again this past July. Thankfully only minimal regurgitation was created from both...so we will continue on this path until it is no longer effective and then a valve replacement will be required...hopefully in the far off future...but there is no crystal ball with these guys..too bad!
Well he is a ball of fire none the less and one would not know any different to look at him. A 36 pound and 37 inch 3 year old!
glad to chat with you all and I look forward to many postings and discussions!
Theresa

Theresa,
I'm glad you've joined our group. I'm sure your experience with Kristopher will be an invaluable source of information for other moms with children who have stenosis and a bicuspid aortic valve.

 

[Hank]

Hey "brookspr6"..

Hey "brookspr6"..

Glad you made it to the forum.

I work with brookspr6 at work and he is one of the good guys.

I hope that you find much information here to help you be as prepared as you possibly can for yours daughters care over the years. Education is a good thing... It is the only thing to counteract fear and uncertainty.

Hank

 

[Susan BAV]

Glad you made it to the forum.

I work with brookspr6 at work and he is one of the good guys.

I hope that you find much information here to help you be as prepared as you possibly can for yours daughters care over the years. Education is a good thing... It is the only thing to counteract fear and uncertainty.

Hank

"Education is a good thing... It is the only thing to counteract fear and uncertainty."

That was worth repeating, Hank!

Welcome, brookspr6 and 1Tree1975!

 

[brookspr6]

General Dental Surgurey (edcuating the doctors?)

General Dental Surgurey (edcuating the doctors?)

Thanks to everyone for your comments. This is a great place to be!

We have an new challenge...
Jessica was board with a cleft lip and pallet (a secondary result of being a CHARGE kid). Well now its time to start doing work on her pallet and some teeth will need to be removed and some cavities filled. This will require that they put her under.

The Dentist is talking to the cardiologist. But given Jessica's BAV (I'm learning the TLA ) he is skidish about doing anything because he doesn't have "equipment" in case Jessica's heart does something during his procedures.

I know Jessica requires antibiotics for dental procedures. In previous procedures the anathesiologists have wanted to know Jessica's history. But is this person over reacting or have I underestimated Jessica being sugurey becuase we have done out-patient stuff to date?

Thanks again for your information!
Pat

 

[Susan BAV]

Hi Pat -

I don't know if your daughter's oral surgeon is over reacting or not. I'll tell you my experience though:

I had at least four surgeries under general anesthesia prior to the replacement of my BAV, all with no complications. One was my tonsils removed at age 7. One was all four of my wisdom teeth removed at age 18. I don't think any of those doctors/surgeons were much, if any, worried about my heart murmur.

I have two friends (both are now either side of 50) who had their cleft lips and pallets repaired as children. Don't know for sure if they had heart issues also though. One of them had his repaired as an infant but his was particularly severe. Actually, the other friend had his lip repaired but I'm pretty sure he said he'd never had his cleft pallet repaired but I don't recall why not.

Also, after my first heart surgery, at age 17, I recall my regular doctor had me in his office frequently, in the first several months post-op, because that's a time a healing heart may be more vulnerable to infection and I seemed to catch a lot of colds and he kept giving me antibiotics and penicillin shots.

Are the doctors concerned because of how recent Jessica's balloon precedure was?

 

[brookspr6]

Hi Pat -
Are the doctors concerned because of how recent Jessica's balloon precedure was?

Thanks for the input. I think I will have to dive into this a little more next week with my wife. My immediate thought was the guy we went to see hadn't delt with a Kid with a heart issue...

 

[StretchL]

Hi!

Just wanted to tell you something you already know well... you have a beautiful little girl!

 

[brookspr6]

Thanks!

Thanks!

Thanks - she a neat Kid.

 

[Karlynn]

Not sure how I missed this whole thread until now. Just want to say "Welcome" and we're glad to have you here. And your daughter is beautiful.

 

[francie12]

Our son had urinary tract surgery a couple of years after we found out about the BAV and associate conditions. He cruised through it with no problem whatsoever, under general anesthesia for about 40 min. None of the drs. seemed too concerned with the BAV. (They did give less IV fluid than they ordinarily would have so as not to overload the heart.) Our family dentist has several patients with heart valve problems and, aside from the antibiotic premedication, treats them as he would any other patient. Hope this helps and good luck!