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[Curtsmum]

I don't fully understand Curtis's condition, they have told us that he will need a mechanical valve, that is why they want to wait untill he is a teen before surgery.Which is fine by us, at the last apointment we was told it needed dealing with, then at the next appointment we was told that there does't seem to be any rush. We will find out for sure in january after a cath and t.o.e when he needs surgery. If it needs doing before he is a teen would i be best arguing for a tissue valve, because a mechanical would need replacing anyway.The doctors have just messed my head up, it seems like it all depends on the pressure on his lungs. I know none of you are surgeons , and can't decied the out come, but i 'am really confussed at the moment, any ideas Paula x

 

[Randy & Robyn]

It is my understanding that a teenager would burn through a tissue valve in a matter of a few years because of their fast metabolism.

However, with the latest mechanical valves, I think there is certainly a chance that one valve could last an entire lifetime.

I think the big issue with a teenager would be whether he would be responsible with his coumadin therapy or whether he would be a bit rebellious.

Randy

 

[PapaHappyStar]

There is a chance it will last most of his life, in fact the best chance there has ever been with the new machanical valves on the market.
Still being so young you might want to try any other biological option that may be feasible for him ( i.e. repair, autograft etc. ) -- artificial tissue wont last very long compared to his life span so it does not make a lot of sense as a cure.

 

[Curtsmum]

I'am just feeling abit emotional at the moment and that is why i'am asking my question, but i'am talking about now as my son is only 8 at the moment, so if he needed surgery now wouldn't it be better to go tissue and see how long that lasts, instead of mechanical what would need replacing again when he was a teen anyway, its just that the consultant said it would have to be mechanical, i now i should have asked this at the check-up but i didn't think and now i'm just confussed.

 

[Lynlw]

you're talking about surgery before he is a teen, right?

you're talking about surgery before he is a teen, right?

I think we talked about this when you first joined so incase I'm reading this wrong, you are asking about if he need the valve in a few year right? if that Is the case, then the first thing I would find out ishow big of a valve they would be able to put in because if he is like alot of kids I know , chances are if he gets a valve young, he will out grow it and need to have it replaced anyway. if they think he will out grow it, unless I'm missing something, I don't know what the advantage of a mechanical would be.
I know just with Justin from the time he was 12 til he was 17, we put off replacing his conduit and getting a valve by ballon caths and stents, knowing the longer we could avoid having the replaced, the more time he had to get closer to his full height so he wouldn't need anything replaced until it wore out and not because he out grew it. so IF this is a valve that he probably will outgrow, as long as the valve last 10-15 years, I think you would be fine.
IF he waits until he is a teen to need the surgery, then the mechanical would probably be the way to go,, depending on how things change in the next decade
If you don't understand Curt"s condtion I would call the cards office and tell them you don't understand exactly what is going on and make them explain it to you. maybe even they can write everything down so you can go over it and ask any questions you have and don't be satified until you are comfortable that you understand.
I think I asked before , but sorry don't remeber, are you on any CHD support groups, either inperson or online? alot of the issues w/ the kids are different than adults and you can probably talk to other parents either going thru or have gone thru everything, Lyn www.caringbridge.org/nj/justinw

 

[aussigal]

Hi Paula,,,

Just wanted to say Hi and yeah...I wish I could remember to take my brain with me when visiting the cardio as well...I have all these left-over questions that I never thought of til I got home...

I do like the idea of the CHD guys thouh...I must go find a local mob myself actually so I can have a better understanding of the boys' condition...I have only just realised Steve (10) actually has the beginnings of an aneurysm in his ascending aorta too...just like me ...

I feel silly cos its the same as mine but the rules are different in kids.

(((((((((((((Hugs)))))))))))))
from another heart-mum....

 

[Emma]

Hi Paula,
Curtis has the exact original diagnosis of atrio-ventricular septum defect (AVSD) that Chloe had and its quite unusual in non-downs children. Chloe had the complete version of it so only had a common AV valve rather than a mitral and tricuspid. Do you know if Curtis has complete or partial AVSD??

I'm no expert but I have read and learnt a lot about it and am quite happy to ring you for a chat about it all any time you want and maybe help some of your fears, having been there with Chloe. I know at the time of Chloe's replacement I would have loved to have spoken to a mum who had been through it all but knew no-one so would like to help you if i can.

I think we have spoken before about the fact its not possible to use tissue valves in the mitral position in children. It just wouldn't last and tissue mitral is not (to my knowledge) done over here with children so I don't think you need to be worrying about that option as I'm pretty sure you don't have it I'm afraid. Could always check with Curtis' cardi on that though.

As with Chloe, we were told it would be mechanical and it really isn't that bad - honestly! Chloe has had hers for almost 5 years now and she's SOOO energetic it's unbelievable. She's doing very well and her consultant is very hopeful this valve will last a lifetime (and so am i!!!) and I'm sure, when Curtis valve is replaced - whenever in the future that is, then he will do very well too.
As far as I remember he's not on any meds yet is he? I would imagine that when his valve regurg starts to worsen, they will put him on some drugs first to control the regurg and put back replacement for even longer. Drugs such as diurectics and captopril or enalpril are commonly used to control our children's conditions and can successfully do so for some time.

Let me know if you'd like to chat some time

Love Emma
xxx

 

[Emma]

And picking up on Lyns point too - it will depend on the size of Curtis heart at the time on how big a valve they can get in. Chloe's heart was extremely enlarged at the time of surgery due to the severity of her regurgitation from her valve and so got an adult sized valve in at the age of only 20 months. But I am fairly certain Curtis will have to have mechanical not tissue whatever age it is done. Please don't worry about this though if at all possible - warfarin is not the monster drug its made to be as I, and others, have said many times before - its a pain, yes, and it has drawbacks as our children grow up but they do lead normal lives with it and consider the options Curtis would have without replacement and warfarin and the warfarin doesnt seem anywhere near as bad!

Love to you
Emma
xxx

 

[Curtsmum]

Thanks for replys, Thanks Emma, we was told that Curtis may have downs before he was born. I only know that he had a hole and valve repaired, then the mitral valve was too tight and Curtis has mitral stenosis. I didn't know that they don't use tissue valves in children but they have only mentioned mechanical anyway. I will get the busy christmas period out of the way, then i will pm you and we can exchange numbers. Thanks Paula x

 

[Lynlw]

Thanks Emma

Thanks Emma

THAT was the part I was missing, I didn't realize before that they can't use Tissue valves in the mitral spot in children, Lyn

 

[gijanet]

Sorry so late chiming in...........

Sorry so late chiming in...........

but have not had computer access for a while. (((hugs))) It can be so confusing. I'm betting that they are able to place an adult size valve in Curtis. Katie, at four, was able to receive a small adult size valve, so we are hoping that this will be able to last her. Course we know with Katie that this was probably not her last surgery, but we hope it is for a very, very long time. The problem with tissue mitral valves in children is that they calcify so quickly - our surgeon told us we would be lucky to get four or five years out of one. Hopefully, with the improvement in the quality of tissue valves this will change in the future. Deborah has had tissue valves in the mitral position and I think has had two so far with her third surgery pending......... Our surgeon really would not consider a tissue valve..........maybe if we had really pushed, but with what all we went through with Katie's last surgery and the post-op complications, I am glad that we didn't go tissue. I just pray that this one lasts a very long time. Sending hugs. Janet

 

[Curtsmum]

Thanks for the replys and the information, iam feeling ok again, was just having a moment. Im looking forward to christmas and puting it behind me until he as his cath in january, we should get some proper results then, so i am chilling out for a while, thanks everyone