Pulmonary Valve Choice for Child

[Lisa in Katy]

What about the tons of kids who are diabetic and take insulin? There's much more involved in that than Coumadin. Shots a couple of times a day, blood tests a couple of times a day, strict diet....

I've taught first graders. Believe me, you can't get too much past them! If they are told that they need to take a pill to live, they may ask a million questions, but they will do it.

 

[Ross]

The point were trying to make is that Coumadin and anticoagulation is not that big of a deal. At any rate, we can discuss that further in the anticoag forum, but we need to address the original question at hand. I think Daniel can plainly see our beef with what's been said, and that is that mechanical should not be ruled out.

 

[George]

Considering that the patient is a child, I would think that there will be need for any artificial valve to be replaced at some point in their life. I think part of the reason I didn't receive a pulmonary valve when I was 10 years old was due to the fact that my heart would continue to grow in size until I was an adult.

 

[abbanabba]

Considering that the patient is a child, I would think that there will be need for any artificial valve to be replaced at some point in their life. I think part of the reason I didn't receive a pulmonary valve when I was 10 years old was due to the fact that my heart would continue to grow in size until I was an adult.

I was just wondering about this... even IF there is the option for a mechanical PV, if the child is still growing (after all, she is only 6) will she "outgrow" it and need it replaced anyway? If this is the case, then personally I would go a tissue valve and avoid the ACT issue altogether (just my thoughts on what I would do if I were a parent).

Sure, it may be safer than we're lead to believe (and I am happy to believe you on this one Ross), but if it can be avoided, why further complicate things? I would also worry not so much about the kids, but the parents who might be prone to then wrapping that child in cotton wool for the fear - real or not - of what might happen if that child were to have a "mishap" (as kids so often do).

Again - just my personal thoughts, for what they're worth.


A : )

 

[kfay]

I have read of several children who have absolutely had to have a mechanical replaced as they grew...it kind of defeats the purpose of a mechanical. Also, I was told by my surgeon that to use a mechanical on that side of the heart would require me to keep an INR of 4.5 due to higher clotting issues on that side of the heart. It was something that he said they just don't recommend.

Kim

 

[Ross]

Also, I was told by my surgeon that to use a mechanical on that side of the heart would require me to keep an INR of 4.5 due to higher clotting issues on that side of the heart.
Kim

Mr Surgeon is wrong. There is no further benefit beyond an INR of 4.0. That is in the literature or prescribing info.

 

[ALCapshaw2]

I suspect that Daniel may not have read ANY of these replies.

His message counter still shows only 1 message sent and when I checked with Ross a few days ago Ross indicated that he had NO record that Danial had ever returned.

 

[Isfahan]

Mechanical valves in children

Mechanical valves in children

Hi
I know this is a slight hijack to the thread but I have noticed all this discussion of mechanical valves and Coumadin for kids so I couldn't resist.

My son (Wren) is 22 months old and is facing surgery for left-ventricular outflow tract obstructions. His aortic valve is stenotic and close to the lesions so he may require a valve replacement.

If he does, he will be getting a mechanical valve in the aortic position AND be on Coumadin.

His surgery is going to be with Dr Hanley, Nov 7th, at Lucille Packard Children's Hospital at Stanford, CA.

Now, we have received numerous consultations with surgeons and cardiologists and while nobody would propose a mech valve in the pulm position, they are used in the aortic position in young children. In fact, the only viable alternative is the Ross Procedure (inadvisable in Wren's case due to bicuspid aortic valve disease, mitral valve abnormality, Shone's syndrome).

Of course, its horrible to face the prospect of Coumadin in an active toddler BUT nobody likes the alternative of numerous valve-replacements. According to both surgeons and cards, the take-down of the kono required for each sequential 'upsizing' of calcified bio-prosthetic valves is a risky operation. Scar tissue only adds to the complexity.

Calcification of porcine and bovine valves is much higher in children due to the high level of metabolic processes for bone growth and 'calcium dumping'. I am sure someone could explain this scientifically, I know only the laymans and parents explanation.

An added concern in human valve replacements in children with complex heart defects is that the life expectancy of the repair is unknown. Many children may require heart transplants in later life and the antibodies developed in response to human grafts make matching more difficult.

Finally, we have been told that there is a genetic test to profile for Coumadin response. This can make reaching desired INR easier in pediatrics. We will investigate this if the case arises.

I welcome any debate or information on this point - as I said - we are three weeks out from surgery. We are hoping that the valve CAN be saved for 5 years or more to get Wren a bit older prior to Coumadin but we have to accept it as the best of the bad options presented to us and not right it off as an unmitigated disaster.

 

[Lisa in Katy]

Isfahan - It sounds like you've done your homework. Everything in your post makes sense to me. As I said earlier, if it were my child and a valve on the left side, I would go with mechanical in an attempt to minimize future surgeries. Good luck to Wren and the rest of your family.

 

[Phyllis]

Isfahan, my heart and prayers go out to you and your son. I put him on the calendar and I will be praying that the valve can be saved!

 

[Ross]

People on Coumadin are not eggshells that break if dented, scratched, bruised, etc. Lord knows the medical community thinks this way, but it is not the case. In the elderly, all this would be a worry, but for children and young adults, Coumadin is not, I repeat, not something to fear. Kids fall, kids fight, kids do this and that and so do adults and there are plenty in these forums that will tell you that your going to be fine.

The medical community needs to bring themselves up to speed and get everyone on the same page. As soon as everyone is, so long as a persons INR is being maintained, your not going to hear half the stories you do now. Most of them are unfounded to start with.

 

[ALCapshaw2]

Welcome Isfahan,

You may want to investigate the latest in mechanical valves from On-X. See www.heartvalvechoice.com and www.onxvalves.com for details.

I gave contact information in an earlier post in this thread, #22, on Wednesday, Oct 15.

'AL Capshaw'

 

[goffrey]

My 12 year old son diagnosed with Tetralogy of Fallot with pulmonary atresia currently has a porcine pulmonary valve. The valve was placed when he was 4 years old and is 16mm.Tyler had a nonvalved conduit before the porcine valve was placed. The surgery was performed at Mayo Clinic by Dr. Francisco Puga. We are gearing up for a valve replacement next month. Tyler has outgrown his pulmonary valve. Dr. Puga has retired and we will be using Dr. Dearani as our surgeon. From the research I have done over the years mechanical valves in the pulmonary position are rarely used. The new transcatheter valve replacement technique is not an option for us...I spoke with Dr. Lock at Boston Children's Hospital and for a child to qualify for the transcatheter valve replacement the child's current pulmonary valve needs to be large enough. Tyler's 16mm valve is considered "borderline" and Dr. Lock did not feel comfortable with the size. In my opinion from the research I have done, our own experience and the experience of numerous families I have known porcine, bovine or human cadaver valves are all a good option for pulmonary valve replacement. If you are not comfortable with your surgeon's choice of a mechanical valve I would seek 2nd opinions from other surgeons.

 

[abbanabba]

Hey Goffrey... I hope all goes well with your son's PVR next month.


A : )

 

[Bryan B]

I have always been under the impression that mechanical valves were not well suited in the pulmonary position due to the very low flow of blood moving through the pulmonary valve. This low flow would (and does) increase the risk of thrombosis. But I didn't type that response last night and instead "got my google on". It seems that mechanical valves are used in the pulmonary position more often than I thought with little negative effect...at least no more so than reoperation to replace the tissue valve. It does sound like the Onyx valve would be the mechanical valve of choice for pulmonary valve replacement if the patient was set on recieving a mechanical valve.

BUT...if a tissue valve implanted in a child can last long enough to give the child a chance to grow then they would be a good candidates for percutaneous pulmonary valve replacement in the future. There are a lot of pros and cons to weigh. You don't want to see your child have to go through a re-op because the tissue valve didn't last long enough to allow their RVOT to grow enough to be eligible for percutaneous replacement of the valve. On the other side, once a mechanical valve is inserted in the pulmonary position then using the percutaneous method of replacement is not an option.

From the article I found on Google the thought was that if the patient was already on a lifetime regimen of Coumadin then using a mechanical valve was a viable option. They also mentioned that out of the 3 biological valves the pericardial valve lasted longer than the porcine or the homograft valves in the pulmonary position.

I just thought I would chime in since I was under the belief that a mechanical valve was not a viable option in the pulmonary position and I learned by doing a little research that indeed they are a viable option in the right patient.

 

[goffrey]

Hey Goffrey... I hope all goes well with your son's PVR next month.


A : )

Thank you! Did I see you are also getting ready for a PVR? My son is having his done on Dec 11th.... 5th heart surgery for him....

 

[gijanet]

Goffrey

Goffrey

Welcome to the group, although I am sorry you have to be here. Why don't you start a thread in the pre-surgery forum so everyone can get to know you? We will add your son to our prayers. Please keep us posted. Hugs. J.

 

[Isfahan]

My son has just been discharged after OHS for an aortic valve and sub-aortic repair. While in the CVICU we met two other families whose children (age 8 and 15) were in for pulmonary valve replacements. It was their 3rd and 4th surgeries respectively. BOTH received porcine valves from Dr Frank Hanley at LPCH Stanford. He is a superb pediatric cardio-thoracic surgeon.

Even though the valves may be outgrown, he said you can get 5-8+ years from a porcine valve in an older child and if the valve is inserted young, due to growth the valve is likely to be outgrown in preteen growth spurts. This means its not worth putting in a mechanical (in the aortic position). He did not mention a mechanical for the right side.

A parent told me that kids with ToF (who have complex CHD repairs and need PV reps) are not candidates for non-OHS valve reps because their conduits or arteries are often stenotic or have scarring from prior surgeries. I don't know if that is the case for all of them or her experience.

Shannon

 

[abbanabba]

Thank you! Did I see you are also getting ready for a PVR? My son is having his done on Dec 11th.... 5th heart surgery for him....

Wow - number 5 already... that's pretty tough on a 12 year old, but kids are amazing in their ability to cope. I hope this one is able to last him a little longer.

And yeah.. he's in the day after me! Here's hoping it's a cakewalk for us both


A : )

 

[goffrey]

Wow - number 5 already... that's pretty tough on a 12 year old, but kids are amazing in their ability to cope. I hope this one is able to last him a little longer.

And yeah.. he's in the day after me! Here's hoping it's a cakewalk for us both


A : )

Will keep you in my thoughts for a "cakewalk!".....