rejection of homograft

[RI Mom]

Hi all, I am new to this site. I am the mother of a 6 year old boy who had mitral and pulmonary valve replacement surgery about 18 months ago. While his St. Jude's mechanical valve in the mitral position is doing great, his little body has basically destroyed the homograft placed in the pulmonary position. We have a stent in there now in order to buy us time but I'm very dismayed about the lack of alternatives to a homograft. His cardiologist is suggesting another homograft but I am not supportive of this. Another mechanical is tricky in the pulmonary position and the only other thing out there is a conduit made a dacron with a pig's valve sewn in. Anybody out there with anything other than a homograft in for the pulmonary? If so, I'd be interested in knowing how it's going.

Thanks!
Mom to 6 year old born with partial AV canal defect and pulmonary stenosis
2 open-hearts, 4 cardiac caths - replaced mitral and pulmonary

 

[ALCapshaw2]

Mechanical Valves are generally not recommended for the Pulmonary position due to low pressure / velocity and the risk of clot formation. The relatively new On-X valve might be an exception to this guideline with it's lower potential for clot formation.

I'm surprised no one suggested either one of the improved Porcine Valves or a Bovine Pericardial Tissue Valve as a possible alternative. ASK his surgeon about those options.

Hope you are able to find a viable option!

'AL Capshaw'

 

[Adrienne]

I am not at all an expert on this subject, but could it have something to do with the fact that a homograft would actually grow as the child grows (or am I totally wrong about that)?

 

[Lynlw]

My son (and actually most of the other kids/adults I know with Pulm valves) have a bovine valve and if they need a conduit it usually has a dacron or gortex conduit (Justin does). BUT there also is the Contegra conduit that is made from a cows juglar vein. Where does he go from his surgeries? Do they know what the problem is with the Homograph?

 

[tobagotwo]

No, a homograft will not grow. It came from a cadaver, the same as if it came from a deceased cow or pig.

They used to use homografts in children, because it took kids longer to calcify and destroy them than xenografts (porcine/bovine). Kids have very active chemical systems.

However, the xenografts probably last as long or longer than the homografts now, due to the advances in tissue treatment.

At age six, you really don't expect too many years out of implanted valves, because they will need to be replaced as the child grows (that would limit the benefit of a mechanical valve in any position regardless). There are a number of folks here who have dealt with valved conduits for their children. Hopefully, they'll pipe up soon.

Note: rejection is probably not the most accurate term here, because valve calcification is not really a classic immune system response. It's more chemical, kind of like putting an iron showerhead in a high calcium water area.

Best wishes,

 

[goffrey]

My son had a porcine pulmonary valve with a gortex conduit placed at age 4 and it was just now replaced at age 12 so he had it for 8 years....the valve he currently has is bovine and is the Contegra valve/conduit.

 

[kfay]

RI Mom, I wouldn't think they would be willing to go with mechanical for pulmonary and as a patient, if they would place one there, I wouldn't want it. I don't know if you have been to the web site achaheart.org, but it is a web site for people with congenital heart disease. There is a 27 year old woman on there who got a tissue valve (I think bovine, but am not positive) who received that valve when she was 7.

Kim

 

[RI Mom]

Thanks for all of the responses. Even with the stent, the pressure gradient is still in the 50's so I know surgery is not too far off. If I understand it correctly, my son's body had an immunological response to the homograft and it failed miserably in less than a year. I've contacted Dr. Hellenbrand at Columbia regarding the transcatheter valve replacement but my son doesn't meet the weight criteria for that and probably won't for quite a few years. I will look into the valve/conduits that you all have mentioned and contact the surgeon so that we can get our plan together. by the way...my son goes to INOVA Fairfax Hospital in Northern Virginia, surgeons are Irving Shen and Lucas Collazo.

RI Mom
Mom to 6 year old with 2 replaced valves, self-tester INR too

 

[ALCapshaw2]

RImom -

If you are interested in a Second Surgical Opinion,
a couple of our members* LOVE Dr. Bove at the University of Michigan (Google his name for links to the UofM website and other information on his background). He is a nationally recognized Pediatric Cardiothoracic Surgeon.

*GIjanet puts him in the "walks on water" category.
see her profile / posts.

'AL Capshaw'

 

[RI Mom]

Goffrey,

Did your child have the contegra placed via catheter?

RI mom

 

[Lynlw]

The contegra isn't a cath based valve. IF it is any consolation Justin didn't have his replacements until his gradient was much high than 50, but he wasn't having any symptons. I can understand how you feel Justin has had ongoing Pulmonary valve/conduit problems with surgeries or stents or ballooning open the stents almost yearly for the past 10 years (he's 20). IF I personally were going to get a 2nd opinon I'd check CHOP or Boston who are usually ranked 1 or 2 for ped heart centers.

 

[Lynlw]

Not Geffory's Mom, but he wasn't a candidate for the percutaneous because he valve was a little small.

 

[goffrey]

Goffrey,

Did your child have the contegra placed via catheter?

RI mom

No it was through open heart surgery....The transcatheter valve they use is not the Contegra...My son was borderline in qualifying for the transcatheter valve procedure and from what I have read felt more comfortable going with a valve surgically placed.

 

[goffrey]

The contegra isn't a cath based valve. IF it is any consolation Justin didn't have his replacements until his gradient was much high than 50, but he wasn't having any symptons. I can understand how you feel Justin has had ongoing Pulmonary valve/conduit problems with surgeries or stents or ballooning open the stents almost yearly for the past 10 years (he's 20). IF I personally were going to get a 2nd opinon I'd check CHOP or Boston who are usually ranked 1 or 2 for ped heart centers.

I have to agree about those 2 centers and would throw in Mayo....they specialize in tetralogy of fallot and pulmonary atresia and focus on pulmonary valve replacements...any of the three would be a good option.

 

[Isfahan]

And Dr Hanley at Stanford - not sure where you are located.

 

[RI Mom]

I'm on the east coast just outside of Washington, DC. I have thought about seeing someone at CHOP to get an opinion on what they would use. I've been happy with the surgeons and the hospital we use but I really don't want to do this (OHS) every 2 years or so. Anyone know of a surgeon at CHOP that is well-known for valve replacements?

RI Mom

 

[vprnet]

Welcome to our VR community RI Mom.

When I was considering Ross for my VR, one surgeon gave me a tip on something new from Cryolife for the PV called SynerGraft. It was desiged to minimize the effects of rejection and immune system attact.

There is also some hope that this decellurized graft will develope as a platform for ones own cells over time. Its realtivlyt new so with it comes risks that should be very well explored.

You may want to start by contacting the company. This is the same company the preserves PV homografs today with convential cryo preservation. The valve has FDA 510K approval.

http://www.cryolife.com/products/synergraft-technologies/cryovalve-sg-pulmonary-human-heart-valve

Best wishes to you and your son... Vincent

BAVR with 27mm ON-X NYP Weill Cornell Dec 19, 2008.


PS. I am not a medical professional or a doctor. My comments in this forum are my own opinion and are not intended to be given as medical or professional advise or a recommendation of any valve choice. Decisions that affect your health and wellbeing are ultimately yours and your doctors. vprnet

 

[Lynlw]

I'm on the east coast just outside of Washington, DC. I have thought about seeing someone at CHOP to get an opinion on what they would use. I've been happy with the surgeons and the hospital we use but I really don't want to do this (OHS) every 2 years or so. Anyone know of a surgeon at CHOP that is well-known for valve replacements?

RI Mom

Thomas Spray is THE BEST http://www.chop.edu/consumer/pat_care_fam_serv/staff_profile_page.jsp?sid=87413&id=20443 he is GREAT about 2nd opinions from records ect and we needed a 2nd Op ASAP and he fit us in between surgeries and took his time and was very patient with questions (we knew going into the surgery Justin's heart was fused to his sternum with scar tissue so had LOTS of questions)
we had Gruber for an ER surgery and he is could too (he did my nephews surgery when he was 2 months old) CHOP does over 1000 surgeries a year and both Spray and Gruber to most of the transplants. There is a new surgeon who was a fellow when Justin had his surgeries, she was really great,(since the fellows spend more time with pt then the attending, we got to see her more) anyway the reason I mention her is one of her interests is pulm atresia Stephanie Fuller, MD

 

[jntasm]

Hi

Hi

Hello,

I suffer from congenital pulmonary valve stenosis. I consider myself luck to have only had 3 surgeries so far in my life, I am 27 and a mother of one so far. My second surgery was performed by Dr. Callazo in Fairfax, VA. I received a donor valve but 3 years after my body attacked it and I need another one. I had moved to San Antonio and as of November 3rd of last year had it replaced with a pig valve. We chose not to do a mechanical valve for a couple of reasons; 1. Higher possibility of clots, 2. Have to take blood thiners for the rest of my life, 3. No more children. I absolutely love my pediatric cardiothorasic surgeon, his name is Dr. Calhoun out of the University of San Antonio Health and Science Center. If I could give you one bit of advice that has taken me sometime to understand, is that there are no guarantees on any heart valve replacements. They are still learning from this problem, at least when it comes from Pulmonary Valves. I have come to understand that they can tell you how long they think a valve will last and then it doesn't even come close to try and keep my cool and get that it is not their fault but they are guessing for the best. I feel for everyone going through this, as it is not only hard on the patient but also the family. God bless.

Juanita

 

[Lynlw]

Hello,

I suffer from congenital pulmonary valve stenosis. I consider myself luck to have only had 3 surgeries so far in my life, I am 27 and a mother of one so far. My second surgery was performed by Dr. Callazo in Fairfax, VA. I received a donor valve but 3 years after my body attacked it and I need another one. I had moved to San Antonio and as of November 3rd of last year had it replaced with a pig valve. We chose not to do a mechanical valve for a couple of reasons; 1. Higher possibility of clots, 2. Have to take blood thiners for the rest of my life, 3. No more children. I absolutely love my pediatric cardiothorasic surgeon, his name is Dr. Calhoun out of the University of San Antonio Health and Science Center. If I could give you one bit of advice that has taken me sometime to understand, is that there are no guarantees on any heart valve replacements. They are still learning from this problem, at least when it comes from Pulmonary Valves. I have come to understand that they can tell you how long they think a valve will last and then it doesn't even come close to try and keep my cool and get that it is not their fault but they are guessing for the best. I feel for everyone going through this, as it is not only hard on the patient but also the family. God bless.

Juanita

Hi Juanita, I'm sorry your valve didn't last very long, I understand how you must feel, Justin had his pulm valve/conduit replaced when he was 17 and a year and 1/2 later it was blocked, it ended up being part of his conduit (he has conduit-valve-conduit, but his valve was 100% good so they just replaced that section of conduit.
Was this the valve you had when you had your child? I'm glad you found a ped card you like when you moved, does he specialize in adults with CHD? Lyn
ps you should start your own thread so more poeple see you are new and can say Hi