Question- AVR in kids

[CCmomOH]

HI,

My 6 year old son is being prepared for AVR. He had open heart last March for repair of his aorta. After they got in there it was the aorta that was the biggest problem. Two patches of gore-tex were added to his aorta and it was quite sucessful.

Prior history, born with pulmonary & aortic stenosis, along wtih regurgitation and insufficiencies in both. Pulmonary valve was ballooned succefully when he was 4 weeks old. HIs aortic valve continued to get slightly worse until it needed to be repaired. When the surgery was done on his aorta, the surgeons were able to do a little triming on his aortic valve but we were told it was extremely deformed, thickened, very abnormal and would need replaced at some point in time.

Well, that time has arrived! ALREADY! He had a cath done in Dec and it confirmed the tightening of the valve but the biggest problem is that some cardiac muscle has wrapped itself around the top of the left ventricle, basically choking it. I saw the videos of prior surgery and the current heart cath. The choking was not there in the first video during his surgery. Our cardiologist put him on a beta blocker for a month to see if reducing the force of the heart pumping will reduce the turbulence thru the valve and buy us some time. The area above the valve looks great and is working fabulously. We will find out 2/9 if the medicne is band-aiding the situation. They do not want to do the surgery until absolutely necessary.

Now...what valve do we go with? They have discussed this slightly with us and it seems the entire team of doctors have a different opinion with the same goal! They want him to be able to maintain as much of a normal, active life as possible. He is a very athletic little guy so we want to avoid any medications, such as coumadin if at all possible, however, a tissue valve doesn't hold up as well in kids as it does in adults...what to do!!! He would need another heart surgery later on as he grows so we want to eliminate numerous surgeries but then we want him to be as normal as possibe. Doc says if we go with mechanical valve and the coumadin, no contact sport at all! This little guy is extremely active and a real tough guy, always going at 150% at everything he does. It will be extremely difficult to restrict his activity.

I know the doctors will give us an abundance of info on our 2/9 visit but was hoping maybe someone here has had this experience with their child or know where I an find out more about VR in kids.

Thanks for "listening"

Brenda AKA CCmomOH

 

[tobagotwo]

It's Hobson's Choice, Brenda. I do not have a child in your situation, and I thank God for not having to make such a choice myself. I wish you strength through your deliberations and the surgery to follow.

Some thoughts about this...

The main value of a mechanical valve is that it enables the patient to avoid or postpone resurgeries. However, many young children require a reoperation when they get older because the size of the valve that will fit is too small to support them when they fully grow. I am not certain if your son is still in the age group that this applies to.

Given that, some questions might be: Will that be the case with your son? And if so, how many years is it likely to be before he would have to have that resurgery?

If it is ten or less, one of the newer biological valves might work out for your son's early years, and you and your surgeons might want to explore the possible values of that option more closely. Your son would still be able to switch to a mechanical valve the next time around, when his heart is adult sized, and the implanted valve would be more potentially permanent. Or he could continue with another tissue valve if you decide it. He would be old enough to understand the risks to some extent and be able to form an opinion for you to consider.

If there is no reoperation anticipated for him, then you are back to your original parameters of hopeful permanency vs hopeful freedom.

Studies support that life expectancy over time is equivalent for either type of valve, based on the risks of anticoagulation therapy and thrombosis with mechanicals, vs. the risks of reoperations for tissue valves. That would mean that neither should be termed the "safer" choice. But I would also note that most people in those studies were probably older than your son to begin with.

It is generally agreed that young patients tend to rebound much more quickly from OHS than older ones. But it is much easier for me to post that, than for you to hand your son back over to a surgeon when he is in his teens.

And it is also reasonable to point out that, although a mechanical valve might theoretically last his entire life, there is no one who has had a single mechanical valve implanted for 71 years (his life expectancy). I believe there is no one so far who has had his original mechanical valve implanted for even half that time. Almost everyone seems to have had to explant and replace their mechanical valve just short of 30 years, although a new crop is approaching that mark now, with hope to go longer.

I'm sure your decision will fully weigh quality of life as you see it for your son. He's too young to decide this on his own. Either way, you must put the decision behind you after his surgery, as there will be no value to you or your son in second-guessing your choice then.

My hope is that things go well for you.

Best wishes,

 

[CCmomOH]

Thanks Bob

Thanks Bob

Thank you for the information and things to think about!

I do know the "plan", although loosely planned at this time, would include another surgery later. This surgery is called the KONA procedure where they basically put a hole in the septum and patch it with goretex while at the same time enlarging the annulus and "installing" the new valve. The main consensus is to use a tissue type valve to hopefully eliminate the medication issue (which I know there are no guarentees) and allow him to maintain an active lifestyle. We would be hoping this surgery would get him through until he is an older teenager or young adult, approx. 8+ years if possible. At which time he would, obviously have an opportunity to take part in an informed decision about what he wants. Right now he just wants to be done with it all. Which I am sure we all can understand!

He did really well after his last surgery. He was amazing! He was about 6 weeks post-op when he told me he thought his "hyperspeed" was back. It is really hard as a parent to see your child in the PICU with all the equipment and watching his eyes tear up from pain and all you can do is reassure him it will get better. Fortunately, he doesn't remember being in PICU, he thinks he was only there a day or two. He knows he will be going in again and is really dealing well so far. It is difficult but we give him more information in small doses when he asks questions. It helps that I am currently in college studying to become an echosonographer. I can at least explain to him in basic terms at his level what it is and why it needs done without terrifying him.

Thanks again! I will gathering more information to help us make this decision. I know our son's cardiologist will give us a lot of info also, he is fantastic.

Brenda

 

[KeegansMom02]

I have a VR child as well...

I have a VR child as well...

Hi Brenda~

My name is Lisa and I am the mommy to a 2 1/2 year old little boy who had Mitral Valve replacement 11-1-02 at just 2 1/2 months old. We were never given a choice to the valve selection, they just decided on a St. Judes Mechanical valve. We have had little to no problems in the over 2 years he has had it other than regulating the Coumadin which is no fun...

I would love to answer any questions you may want the answers to. Feel free to e-mail me @ [email protected].

 

[Harpoon]

Where's the surgery (I noticed you're in the Buckeye state)? Just cause Dr. Mee at Cleveland Clinic is (arguably at least) the best in the business, period.


With his age, either way may lead to a second surgery later in life. The "advantage/disadvantage" of going with a mechanical and dealing with anticoagulation therapy isn't generally as hyped up as it can be... I imagine with young kids it might be a LITTLE more of a hassle to do the regular blood checks but if you can get yourself a home testing kit (some insurance plans cover that, some don't, though it's getting better) or find a clinic in your area (maybe even your current pediatrician) that is set up to monitor anticoagulation therapy then it may be as simple as a pin prick in the finger, once a month....

I was doing regular blood draws for a while until I found out my primary physican (a family, group practice) ran a anticoagulation clinic. I just got my protime done today and have been sporting a flourescent pink bandaid on my left ring finger. It's no worse than checking blood sugar for a diabetic, very quick and simple.


Taking the pills just means lining things up before eating breakfast or dinner. That's also pretty simple, just needs a little adapting to. My son (he's four) helps me almost every day, I also take a pair of diuretics, and two heart meds in addition to a mutli-vitamin and Prilosec because all the other meds can sometimes cause acid reflux but I've got a "predisposition" to that one anyways.


For what it's worth, mechanicals (at least in adults) generally "outlive" the patient, or at least they have the potential to with clean, good living.

 

[surfsparky]

Brenda...

Brenda...

I can't even begin to imagine what you must be going through right now. I have a little boy, Noah about to turn 6, and I know that when he is hurting, my heart just breaks inside. And he never had to go through what your little boy has and will go through again soon. It must be so hard for you...do you have a good network of support around you?
I echo Bob's thoughts...there is no clear cut answer (although sometimes it would be easier if there were!), perhaps just writing down all of the advantages and disadvantages of both might make things a little clearer. While you're doing that, write any time you need to vent, ask questions or just need support...we are all here for you.
Hopefully too, some of the other VR members who have children who have undergone AVR will see your post and respond too.
Know that you are in my prayers,
Yolanda (Chris' wife)