How to know what is best?????

[derekzmom]

My son is 5 and has CHD and Down Sydrome. He had a PDA and COA repair at 7 days, AVSD repair at 18 days, sub-aortic stenosis resection at 3 yrs 3 months, mild mitral regurg and is in remission from Leukemia. His sub-aortic stenosis has returned along with thickening of the aortic valve. He is going to need his aortic valve replaced but the question is with what? His cardiologist at first said that they were leaning towards doing a Ross/Konno on him and then 2 months ago said they would more than likely go with a mechanical valve.

I am not at all crazy about the thought of a mechanical valve and having to deal with the anti-coagulation issue. Also if he relapses with his leukemia it is going to be very difficult to keep his coagulation levels stable.

I have been doing some reading about the many different types of valves that are available and am looking for some input from people who have had the different types. Does anyone have the Cryolife CryoValve in the aortic spot?? What about a homograph??

I am very confused about this whole thing and dont want to put my son through anymore than he has already been through but the choice in the end is mine alone (as his dad doesnt really have an opinion and just wants to do what is best) and that scares the s*** out of me. The choices that I make will affect his life forever, so I really need to do what is best.(whatever that may be)

Thanks

Allison

 

[Ross]

Boy Allison, your in a tough spot. Welcome to the forums. Hang in there, you'll get all the answers you ever wanted by people who have been there and done that so to speak.

There are many choices, but for all that the poor kids been through, I'd have to side with mechanical also. It provides the least chance of having to be replaced despite all his other medical problems. A tissue valve won't last him very long, Ross procedures in my opinion, just don't hold up well and would require reoperation some time soon in the future.

I'll let some of the others explain and compare. I'm simply partial to the mechanical to save him from reoperation if possible. Coumadin isn't terrible, but I can certainly understand your concerns should the Leukemia return. Lets see what everyone else has to offer.

Again, welcome to the forum. Learn as much as you can from other threads already posted while your waiting on replies to this one.

 

[LUVMyBirman]

Hi Allison,

I am so very sorry for what you and your son have been through to date.

Have a mechanical valve myself. Pleased with my decision and would not change a thing. But, I would not wish a mechanical on any child. Your son will at some point outgrow his first valve. They boast about the longevity of the mechanical. It is my understanding that in young children the heart is not fully grown thus necesitating a larger replacement valve as the years pass until the heart if of full growth. At that...the re-op risks at age five with either valve are almost the same. Tissue valve would last about the same duration as a mechanical I believe.

If it were my child...I would be leaning towards a tissue valve. Do agree with Ross the that "Ross Proceedure" may be too risky for your little one.

Wishing you all the best.
God Bless and keep us posted.

 

[derekzmom]

Thanks for the replies. I know that if my son, Derek has the Ross procedure that the pulmonary valve will have to be replaced in between 5-7 years, and there is also the risk of calcification and having to have it replaced sooner. I am looking for all the input that I can get and am also looking at getting 2nd, 3rd and 4th opinions from other Paediatric Cardiothorasic surgeons.

Hugs

Allison

 

[Granbonny]

Allison

Allison

So sorry about your little boy..Please post where you live. We have members all over the world.. We may be able to tell you more..about where to take him..to best hospitals...For his health problems.....Do you trust your doctors? He may have to be on coumadin..even with a tissue valve...For a little while...If he is not active..as in sports...it should not bother him.... Even us older Mech. valvers..know not to do anything stupid..like skiing, ect. while on coumadin...Just don't want to fall and hit our heads. Please post again..Bonnie

 

[Karlynn]

Hi Allison,
Welcome to our "home". First of all, your son has to be one heck of a great kid, with a name like Derek. That is my 19 year old son's name.

I have a mechanical mitral valve, and like Gina, really tend to lean towards that decision for adults that are young. (I was 32 when I had mine done.) But upon reading of your concerns, I think I would also tend to explore a tissue valve over a mechanical at this time. As Gina said, it sounds like additional valve surgery would be in his furture either way. Grandbonny does raise a good point that a tissue valve doesn't rule out Coumadin completely - but it's not an absolute necessity in each case, as it is with mechanical valves.

You are in a very tough spot, and being a mother myself, I know I'd much rather go through these things than see my children go through them.

You, Derek and the rest of your family will most certainly be in my prayers.
Karlynn

 

[derekzmom]

Bonnie,

I am from British Columbia, Canada. We go to BC Childrens Hospital. Its not that I dont trust the doc's. They are fabulous!!!! Derek's surgeon is very, very meticulous almost to the point of being anal....LOL I completely trust him with my son. There seems to be alot more options and opinions in the US than there is in Canada, and because they offer most surgeries here (even if they havent been done alot) our medical will not cover us going out of country. Because he has Down Syndrome he doesnt understand the fact of having to becareful because he may bleed. He is a busy little guy who only stops when he is sleeping. He HATES being poked so weekly bloodwork for him would be a nightmare, and the fact that he has 2 veins they can draw from....Thats it!!

Hugs

Allison

 

[fisher6476]

Hi Allison,
What a wonderful and awsome responsibility you have being Dereck's mom. I am glad you found this site because these people are wondeful. I know already from reading your posts that you are already on track. You will keep learning, questioning, discovering, and then you will do what your love for your son tells you is the right thing to do, and you will make the right choices.
God bless both of you. I am sure we all will be looking forward to your future posts

 

[Heather Fisher]

Hi Allison,

You are in a very tough position. It's hard enough for many of us to make a valve decision for ourselves, but for another person?? I had the Ross procedure done at age 46 and so far so good. I understand it's often the procedure of choice in children because the valve does grow with the child. No matter what your choice, you are looking at a repeat procedure at some point. With the Ross Procedure chances are the pulmonary valve would have to be replaced eventually (however replacing a pulmonary valve is supposedly a more simple surgical procedure than replacing an aortic valve). Tissue valves and mechanical valves would both have to be replaced as he grows older due to his growth. Of course the tissue valve would also not be a permanent replacement as it will eventually wear out or calcify. I think I would tend to lean towards a tissue valve of some sort or the Ross Procedure rather than mechanical because the coumadin issues. Sounds like Derek is an active guy who may not understand the need to be careful on coumadin.

Derek's anatomy may also be limiting his choice of valves. Perhaps that is the reason your surgeon decided against a Ross. Has he given you a reason for wanting a mechanical now? I would certainly get other opinions and think about all of the options carefully. No one valve is going to be "perfect". They all have advantages and drawbacks. They will all save his life though so there is truly no wrong choice. Please keep us posted and I will keep you in my prayers!

Heather

 

[Nancy]

Hi Allison-

Welcome to the site.

I'm so sorry your dear little son has had so many problems in his tender years.

I was just thinking, your son is only 5, if they put a mechanical valve in at this point, it would be a size based on his age and physical size, so he'll probably have to have another surgery or possibly two as he grows.

If he has a tissue valve implanted, he'd have the same problem.

So, I'm wondering what the gain would be with a mechanical valve. The downside is that he would have to be on Coumadin, and he'd have to have surgery again later anyway. With the tissue valve, he'd eliminate (hopefully) the need for Coumadin until he gets older and his growth is stabilized. Then he could have a mechanical implanted.

Just some food for thought.