Choosing a heart valve for my son, just looking for support and thoughts?

Question

My son was born with bicuspid aortic valve which has developed a leak. He is now on enalipril 2x per day to decrease the afterflow and buy some time before he has to have surgery, but the doctor has discussed our options and we basically have to choose when it comes down to it, whether we go with a valve repair, or valve replacement and if we do replacement we can do mechanical or donated valve or The Ross procedure. And he will probably be under 5 yrs old when this needs done, (he's 2 now) so I would like to keep him off of coumadin (blood thinner) so he can play sports in school if he would like. But I also want to do what is the best for him long term. Any advice would be helpful. thanks

Answer 1

Wow, that is a tough question. I was 37 when I had my Mitral valve replaced so I know how it feels to choose, but your choice is a difficult one. That was in 2003. I can understand your concern at his young age for not wanting him to be on Coumadin for the rest of his life like I am. On Coumadin, he will also have to go the doctor every single month for the rest of his life. Also, they will not know if they can actually repair the valve until they are in operation. So I understand you have to make the choice beforehand. If they cannot repair his valve and you choose a tissue valve, there is no doubt he will have to have another valve replacement in his lifetime, at his young age several of them. Tissue valves last tpically 10-15 years. Tissue valves can also tear and become infected.



I chose a mechanical valve. I have a St Jude Mechanical Valve, very durable, the more durable the longer they are suppose to last. I was told by my surgeon they could last up to 50 years (I hope it lasts for the rest of my life, because I really don't want to go through that again), so I picked the longest lasting one.



But being on Coumadin at his young age and because he will probably want to play sports, etc., wow, it is a tough decision and because he is so young, even if you chose the mechanical valve he will probably have to have that replaced in years to come also because he is so young. But with a tissue valve and his young age, he could be having this same surgery every 10-15 years instead of 40-50 years or longer. If it were my child I would prefer to get a mechanical valve because of not wanting him to have so many surgeries. Valve replacements are tough surgeries. I wish I could give you a yes or no answer, but it is only a choice you can make. I would rather see my son not play sports than to have to go through such a tough surgery every 10-15 years if a tissue valve is picked.



In spite of chemical treatments to improve durability, tissue valves typically last about 10 to 15 years. They usually fail because of the same calcification process that affected the original valve.



In general, mechanical valves are the preferred choice for children, teens, and adults age 60 and younger, all of whom will likely outlive a tissue valve and need another valve replacement.



Tissue valves are most appropriate for people who are less likely to outlive their valves, which includes people who:



Are older than 65.

Are younger than 60 and have lung disease.

Have heart failure.

Have coronary artery disease.

Have kidney disease.

Have a life expectancy of less than 10 years.



Click on this link I provided so you can read the entire article for further information.



http://www.webmd.com/heart-disease/Should-I-replace-my-aortic-valve-with-a-mechanical-or-tissue-valve



Good luck to you and your son and I am very sorry you are having to go through this difficult decision.

Answer 2

The Ross Procedure:

Advantages: The pulmonic valve is anatomically very similar to the aortic valve and could be an ideal substitute for the aortic valve. The new aortic autograft is a living valve and it will grow as the child or adolescent grows, making this a good option for young patients. The blood flows with less pressure through the pulmonary valve than the aortic valve, therefore a homograft valve could last longer in the right-sided pulmonary valve position. The risk of thromboembolic complications (blood clots, stroke) and the risk of valve infection is very low, lower than for any alternative valve prosthesis. The hemodynamic performance makes the Ross operation an attractive alternative for athletes. The pulmonary autograft valve has a good chance of being a life-lasting solution for the aortic valve. Our qualified guess is that this is going to be the case in 50% of Ross procedure patients.



Drawbacks: The Ross procedure is a technically difficult and long surgery, as it requires two valve replacements. Therefore, this procedure is only recommended for young patients who would tolerate a long surgery time. The pulmonary autograft valve is transplanted from the low pressure pulmonary circulation over to the aortic high pressure system. The valve cusps are strong enough to withstand the systemic pressure, but the pulmonary artery wall does dilate when exposed to systemic pressure, occasionally enough to cause the autograft valve to leak. The risk of requiring re-operation for a leaking autograft valve is about 10 percent within 10 years after the operation. The Ross procedure is not recommended for patients with tissue defects (such as Marfan syndrome) or for patients who have an abnormal pulmonary valve. The pulmonary homograft in the pulmonary position could also fail; the most common mode of failure is that it becomes stenotic. The risk of requiring replacement of the pulmonary homograft is about 10 percent 10 years after the procedure.



The Ross procedure should only be performed by very skilled and experienced surgeons, particularly interested in the operation.

Answer 3

OK I HAVE A 4 YEAR OLD THAT HAS AEROTIC STENOSIS WHICH MEANS THAT AT THE AGE OF TEN HE WILL HAVE TO HAVE A VALVE TRANSPLANT. THE OPTIONS RIGHT NOW ARE A PIG VALVE, WHICH LASTS AS LONG AS A PIG WOULD LIVE, OR A SYNTHETIC VALVE WHICH CAN CAUSE CLOTTING. BUT I WATCHED A DOCUTMENTARY ON A HEALTH SHOW ABOUT A MONTH AGO, AND DOCTORS HAVE INVENTED A WAY TO GROW A HEART VALVE USING CELLS FROM YOUR KIDS HEART. NOW IT WONT BE APPROVED FOR ANOTHER 10 YEARS BUT I JUST THOUGHT I WOULD LET YOU KNOW THAT IT HAS ALLREADY BEEN TESTED AND WAS SUCESSFULL, IF I HEAR ANYTHING ELSE I WILL TRY TO FIND YOUR EMAIL AND LET YOU KNOW. IM PLANNING ON DOING THE PIG VALVE UNTILL THE MEDICAL BOARD APPROVES THE REAL VALVES, THAN I WILL HAVE THAT DONE TO MY SON, SO I WILL NEVER HAVE TO WORRY ABOUT IT AGAIN. GOOD LUCK, I KINDA KNOW WHAT YOUR GOING THROUGH. keep in touch with me, and let me know.

Answer 4

I am a mom and can only imagine what you must be going through! Hang in there! I also work for a heart valve company and know a bit about valve surgery options and outcomes, but mostly in adults. Especially for kids, the key is finding an experienced surgeon to 1) discuss the best options and 2) do the surgery. I don't know where you are located, but here are some contacts for pediatric cardiac surgeons. This is not an endorsement, but just doctors who I would consult if it were my child. Dr. Forbess is in Dallas, and Dr. Fontana and Starnes are in southern California.

http://www.ctsnet.org/home/jforbess

http://www.ctsnet.org/home/gfontana

http://www.ctsnet.org/home/vstarnes

Good luck!

Answer 5

i've got had various valve replacements myself (5 in finished). After your coronary heart surgical operation, maximum hospitals have help communities for all varieties of coronary heart problems that exist and you are able to probable connect up with somebody there to talk to on a regular basis or weekly. From my attitude, i do unlike mechanical valve replacements. particular, they final approximately 40 years while in comparison with a human valve (homograft) at 10-15 years. Pig (porcine) valves are an incredible selection additionally. some human beings pays attention the mechanical valve click yet you should get used to it. Warfarin (Coumadin) is a risky drug. yet its extra risky in case you do no longer take warfarin on a on a regular basis foundation after surgical operation and continuously after that! Forgetting to take it could screw up INR ranges and can result on your blood to clot extra easily and you should type a clot onto that mechanical valve, which you do no longer want to work out take place. additionally, in case you ever ought to offer different surgical operation, Coumadin must be stopped for many days in the past, that's risky on your coronary heart and much extra risky on your coronary heart which you're going under for non-cardiac matters and have aortic valve problems. you will get chilly lots from the blood thinning and bleed and bruise comfortably. considering which you're youthful and healthful, i think of a non-mechanical valve could be staggering. Now- you'll have yet another coronary heart surgical operation the two way. there is likewise yet another selection reported as the Ross technique often utilized in pediatric and youthful grownup sufferers with large success. They take your pulmonary valve and positioned it into the aortic valve place. Then they replace the pulmonary valve with a human valve. That way, the valve interior the aortic place can stay yours. talk this over what I stated which includes your Pediatric coronary heart expert or customary coronary heart expert counting on while you're an grownup or no longer and in case you have congenital coronary heart sickness. solid success which includes your surgical operation and determine you have an experienced scientific midsection. I relatively have continuously stated that or no longer that's at a school scientific midsection. Cleveland health facility is the terrific of the terrific.