mechanic aortic valves for young children

[inquiring mind]

I am looking to find any information i can about mechanic aortic valves and the short and long term studies/effects/etc. My sister is 10 years old and she had open heart surgery four days ago. The doctor had to resort to their last option which was a mechanic valve. This is all new to us and we would like to know what we are up against. If anyone can help us, we would be greatly appreciative. Thank you!

 

[medtronic of borg]

welcome

welcome

Glad you asked. The valve will eventually need to be replaced do to her growing and it not. But that is years down the the road now that she has a new one in place. But you will now be facing many changes in what she can do in PE class. If you want I can outline them just let me know in a privet note how old she is. I myself am a CHDer and can relate. As I am sure many other good people here are. They will be along soon to add to what I have said and soon you will have alot of support and information.

Med

 

[Susan BAV]

Hi Inquiring Mind --

Hope things go well for your sister. There are several people on this site who have had mechanical valves for quite some long time and do pretty well with them. But like Med said, being ten, she still has some growing that she will be doing.

A suggestion: if you don't get a lot of replies to your question right away, in case people are gone for the holiday, keep posting a response. This will keep your thread toward the front and then more will see it and be able to offer you their experiences.

Glad you found this site. It's been extremely helpful to so many people!

 

[Karlynn]

Hi and welcome.

Depending on her physical size and the size of her heart, they may have been able to use a valve that may not need to be replaced later on. Someone posted a while back (and I apoligize because I can't remember the specifics) but it was a child that they were able to put an adult size valve in. At your sister's age, a tissue valve most likely would have been the last choice, because that definately would have needed to be replaced.

She will now be living her life on Coumadin. While it is a serious medication, it is one that can be lived with fairly easily. I highly encourage you and your parents to visit the web site www.warfarinfo.com It is a web site run by one of our best loved and most appreciated members, who is an expert in the management of Coumadin (warfarin). Some doctors will pass along a lot of very incorrect information on this medication, so I highly recommend you or your parents to post anything they tell you here, and our many people (including myself) who live with Coumadin will be able to let you know if it is correct information.

One thing your sister, you and your parent will learn is that it's best to question everything a doctor or medical professional will tell you and then research it to see if you agree. We talk a lot here about being your own best advocate. Knowledge is power over your own health issues.

Your sister should be able to lead a fairly normal life. She will need to take some precautions, but she should be able to participate in many regular activities. I'm afraid that dodge ball is probably not going to be a possibility. But softball, basketball, riding bikes (with helmet) and many other activities should be within her realm of possibility. We have members here who do triathelons and marathons!

Your sister is very lucky to have you on her side. When you get the chance, we'd like to hear just how your sister came to have a valve replacement. Invite your parents to join in here too. When things like this happen, it's very comforting to know others know what you are going through.

 

[Bryan B]

I believe it was Madison (screen name MadsDad) that was able to have an adult sized mechanical valve (I think she is 5 years old). You can do a search on "Madison" and I think those posts will show up.

HTH

Just did the search myself and she did get a 23mm St. Jude valve. Here is a link to MadsDad's posts.

http://www.valvereplacement.com/forums/search.php?searchid=46961

 

[Bill Hall]

IM,

I had Rheumatic Fever when I was ten years old and had heart valve damage. So, I could not play in many organized sports, where a physical was necessary. However, I don't feel very shortchanged and mostly lived a very normal life and did play street sports with friends. My parents were not very protective and mostly I did not notice that I had a heart problem. I would expect a very similar story for your sister. I did finally have my valves repaired/replaced in 2001.

 

[Emma]

Hiya,
It's my daugher Chloe (aged 4) that had a 25mm adult sized valve put in. it was in the mitral position though not aortic but still mechanical and the same effects apply.
She managed to get an adult one as she was in heart failure at the time and her heart was enlarged to such an extent they were able to get an adult on in.
Otherwise i'm afraid it does mean repeat (albeit fairly short and relatively straightforward - i am assured) surgeries to replace again.
I'm sure you know that your sister will now be on warfarin/ coumadin but i'm not sure how much detail you'd like me to go into and i don't want to just waffle on.
Feel free to post again and ask anything you like and i can try and answer you more specifically then.
Emma
xxx

 

[Harpoon]

Yet another "kid" kickin' it on with a CHD and an artificial valve.


I got mine at 29 though so that might not help you much, however I'm a "life time member" of the zipper club, I had my first open heart surgery about two months after I was born to repair a condition called transposition of the great vessels.

One of the "side-effects" of the repair is the undue stress it places on areas of the heart that simply weren't designed to take such stress, including my tricuspid valve which failed brilliantly about two years ago...

Give or take a few months.

For a 10 year old child, the ABSOLUTE BEST thing you can do as a parent is to let her find her own limitations. Encourage her to participate as much as she feels comfortable with in physical activities, never hold her back.

Granted, some things like organized school sports she might have to avoid due to physical fitness requirements (better to be safe than sorry they figure) but for the most part, if she wants to be active she SHOULD be active.

Eating well is good, staying away from drugs and alcohol is of course good for anyone. keeping fit, not being a couch potato.


Coumadin and other meds that have to be taken all the time can be a drag, but then the alternative is ALWAYS much worse.

I'm actually pleased to take my meds. I CAN take my meds, I almost wasn't able to do that, or anything else ever again for that matter.


A heart condition can be very serious thing, but it should never be an end to a "normal" life. There will be some modifications, some limitations, but many of those can be overcome or worked around easily enough if you take care of yourself.


For most kids, it's really about promoting a good attitude and keeping positive. She'll be aware of her condition, of her mortality, but she should be encouraged to look beyond that at all the things she can still do. She can still be a kid.


Feel free to ask anything you'd like in private messages or in here. I kind of feel like it's an "obligation" to share my experiences with other folks after having gotten so much help for my own "issues" from here, elsewhere, and at Cleveland Clinic where I got my artificial valve.