for kids- tissue or mechanical.... that is the question

[delvalle6]

I met with the surgeon approved by my insurance today. (It still burns me that I have no options or choices)
He strongly recommends a mechanical valve to replace Sammy's aortic valve. I was surprised by this as a mechanical valve means coumadin or warfarin for the rest of his life. Sammy is only 7. What if he wants to party on weekends when he goes to college? He'll have had the mechanical valve replaced with another by then but still... The surgeon said it was an easier surgery and that the valve would last longer- but that Sammy wouldn't be able to play sports- mainly because of the blood thinners. He said a tissue valve would only last 3-4 years, that it would increase the number of surgeries in Sammy's future. This is the first time I've heard this. He also mentioned that there is a space in between the heart and the breastbone that isn't there after the first surgery. I hadn't heard that either.
What do you guys think? For a seven year old boy- mechanical or tissue? He has to have it replaced as a teen anyway since neither will grow... but do tissue valves really only last 3 or 4 years?
How about the blood thinners? any thoughts

For those interested- I posted some photos from our trip to Palm Springs. It was really awesome. **sigh** wish life was always like that...

 

[kfay]

It is widely accepted that a tissue valve doesn't last as long in a younger person as it does in an older one. Most of those 20 year estimates you see are for people 60 and over. Sammy may be able to get more than 3 or 4 years out of one, but probably not a whole lot longer. However, I would think he is going to have to have his mechanical replaced as he grows anyway, so, what's the difference? At some point though, mechanical has to make the most sense for someone like him, and this is coming from someone with a tissue valve.

As a child who grew up with a congenital heart condition myself, I can tell you that you just know what you have to do. So, if he knows he can't binge drink in college, hopefully, he'll pay attention to that. It's not that he can't drink at all, just not to excess which won't be good for him anyway. And I think that a lot of people on here are going to tell you that coumadin doesn't keep them from playing sports.

I know that it must be terribly hard making these sort of life long decisions for another person. Whatever choice you make, it will be the right choice for him at this point.

Kim

 

[tobagotwo]

If Sammy is seven, It's highly unlikely that any replacement aortic valve that's put in him will remain large enough for him once he reaches his teen years. This particular valve will not likely be in him the rest of his life. It will need to be replaced with a bigger valve.

However, there is a possibility that the surgeon is concerned that a tissue valve won't even last him into his teen years, causing an extra operation. On average, children calcify tissue valves much more quickly than adults, so it can be a concern. Or he may be looking at more than just the valve itself being replaced, so it may not be as simple as that.

There are also concerns about children on warfarin, including bone development (Coumadin interferes with vitamin K, which is involved with more than just blood clotting). I'm not sure what the ramifications might be (if any) for bone growth in a child of that age.

Some sports would be more dangerous for him (football, soccer), and the school or his doctor might not let him participate.

The surgeon owes you a reason why he feels this way, so it's worth asking. It may make sense once you hear it.

You can appeal to your state's insurance board, if your surgeon doesn't seem to be up to snuff. I wouldn't hesitate to bring it my congressman, either.

Best wishes,

 

[Lynlw]

If he is going to grow out of it anyway, I think I would probably go tissue. Sammy hasn't had any surgeries yet right? I know I defintately WOULD be getting opinons from a FEW of the leading CHD centers, CHOP, Boston, Uof M and see what they say. As we said before MOST will give a 2nd opinion from records for free. Just contact the surgeons and ask.
I probably would also join one of the CHD online groups like TCHIN's and talk to other parents and see what they have done/been told.
As Bob mentioned I know alot of the kids on coum do get bone scans because there is concern about coumadin on their bones density expecially when they are growing.

AS for sports and drinking ect, Most of the kids I know with CHD know and pretty much accept what they are allowed to do and not do, and altho they do not like it, deal with it. Justin was lucky he could play everything but football, That was one of the few things he couldn't get the docs ok for, but he wasn't on coumadin. I DO know just with his heart and when he had his pacemaker, He had to get lots of notes to be able to play sports in gymn AND teams, both in school and town leagues.

 

[briansmom]

I believe that there is some sort of film that they can put between the breastbone and the heart that reduces scar tissue or at least makes things that are not supposed to stick to each other not stick.

I would definitely agree that a tissue valve will only last 3-4 years. It is a tough choice, though coumadin is not as bad as they make you think. He will still be able to play many sports, the only real worry is a head injury.

Please know that whatever you choose, will be the right choice for your son. I know how much it sucks to be given this responsibility...

Please keep us posted.

 

[gijanet]

That's a tough one!

That's a tough one!

before you make that choice, though, I wholeheartedly recommend a second opinion from one of the larger pediatric heart centers . As Lyn stated, and from my own personal experience, they will do it for free. I don't feel comfortable with the surgeon's rationale that a mechanical valve will be easier. I know our surgeon would never choose a surgery that is easier over what is best for Katie. Also, most pediatric cardiothoracic surgeons know that our heart kids will most likely require additional surgeries in the future, so they take measures to prevent the scar tissue build-up from adhering to the breastbone, which is most likely what your surgeon is referring to. I am, of course, only speculating here, but it doesn't sound like he is prepared or accustomed to doing this. Is he a pediatric heart surgeon? How many valve replacements does he do a year? I had to fight my insurance company when we chose to go out of network (and across the country) for Katie's second surgery. Our PC had to write a letter to my insurance company explaining why it was in Katie's best interest to go out of network. Fortunately, I also had the support of our benefits director who also went to bat for me. It took some time, but it was worth it.

As far as tissue or mechanical, that is a tough one. Tissue valves do calcify faster in children, which is why mechanical was really our only choice for Katie. BUT Katie had had three previous heart surgeries, so we had to go with a choice that would greatly diminish the risk of having to subject her to yet another open heart surgery in the near future. Dr. Bove was able to place a small adult size valve, so we hope that this might last her well into her adult life, but only time will tell. (I was hoping that she would inherit my height 5'2" as opposed to my husband's 6', but at the rate she is growing, I think she is going to surpass me by quite a bit. In this case, not a good thing. )

Katie has been on coumadin for almost half of her life now. She got her valve when she was four and a half, and she will be 9 in November. Katie is quite the little tomboy. The coumadin has not slowed her down any at all as some members on here can attest to, although she does stay one big bruise. She has gotten accustomed to the blood checks. We do test occasionally at home with a finger poke, but her cardiologist has never felt completely comfortable with this, so she still undergoes a blood draw every other month.
The scare stories about the diet are completely blown out of proportion. Katie's diet is just like any other kid's diet, and her INR is pretty stable, with occasional adjustments in her coumadin doseage due to growth spurts.
I can't say that life on coumadin has always been easy, but it has not been as terrifying an ordeal as I thought it was going to be. WE do call when she is on sleepovers just to make sure she took her coumadin.

Having said this, I do wish that Katie did not have to be on coumadin. 'Course I also wish that she did not have to endure all that she has had to endure in her young life. Like Bob said, there are no studies that I have been able to find on what long term coumadin usage has on developing bones. For what it is worth, though, Katie's teeth are coming in just fine, and she has not had a broken bone..............yet! knock on wood! So Katie's bones appear to be as strong as other kids' bones because she has taken quite a few tumbles. Still, if Katie had not had any prior surgeries, I might have opted to go tissue..............I dunno...........

It's a tough choice to make............I know! You just wish that God would step in and whisper in your ear. All you can do is get as much information as you can, and then go with your gut. I do think, though, that a second opinion would give you some peace of mind. YOu don't want to be in a situation later where you look back and question whether you did the right thing. I have done that way too many times, even with second opinions, and it is wasted energy and too many sleepless nights.

Good luck with your choice and please keep us posted. Our prayers are with you. Hugs. J.

 

[RI Mom]

My son required 2 valve replacements when he was 4 years old. The pulmonary was replaced with a tissue valve (the only option for the pulmonary) and the mitral was replaced with a mechanical valve (the best option for the mitral according to our surgeons). One year later, the tissue valve was completely destroyed. This is not typical at all but also not unheard of either....it seems to happen sometimes with young children. He required another OHS just 2 years later to replace that tissue valve.....not fun!! Although we have to be cautious with coumadin, I am grateful that his mechanical is doing so well and am hopeful that it will last into his teen years. The tissue valve I'm less confident about.

This is our experience only and every child's needs are different but I will say that going into my son's 2nd OHS I was most concerned about the mechanical valve and the ACT that went with it but actually it was the tissue that gave us the most trouble. Again, this is our experience only and it would be a good idea for you to get another opinion and then make a decision based upon the info. that you have.

Best wishes!

 

[delvalle6]

One of the options that has always been mentioned is the Ross Procedure. I've don't extensive research and due to different Dr's and Surgeons I've spoken to in the past, was certain that this would be the procedure my son would have. The surgeon I spoke to was fairly anti-ross. I got the distinct impression that the Ross wasn't even an option with him. A ross procedure would buy a lot more time and circumvent coumadin therapy.
I've been leaning towards the ross- but I don't know. I feel like I need more information- I just don't know what it is that I'm missing...

 

[Lynlw]

It would be good if he was a good candidate for the Ross. Did this surgeon say why he didn't like the Ross? IF you get 2nd opions from the bigger CHD centers, that could be a good question to ask them. I believe One of the procedures Spray at CHOP is known for is the Ross. http://www.chop.edu/consumer/pat_care_fam_serv/staff_biography_page.jsp?id=20443&idlist=null