Pulmonary Valve Choice for Child

[DanielCohen]

My daughter will be having a pulmonary valve replacement in December. She was born with Tetralogy of Fallot and had a full repair done when she was 10 weeks old. Now, 6 years later, her right ventricle (RV) has expanded to a dangerous size and the docs want to operate. I understand the need for the surgery, what I'm overwhelmed with is the various valve choices there are. Even more frustrating is that each surgeon uses a different valve! Yet all the docs can't give us any prediction as to how long any of these valves will last in our child's heart. Can someone direct me to a good website or share their child's story so I ask more in depth questions of these surgeons? Thank you!

 

[Mary]

Daniel,
I'm sending a pm request out, but in the event replies are slow coming in, make sure to check back later today after they've had time to respond.
Help is on the way!

 

[Scooby06]

Mended hearts

Mended hearts

Google mended hearts for info like this.

 

[Isfahan]

Hi
My name is Shannon and my son is 22 months old. I recently posted a question regarding the Ross procedure for him. One of the issues with the Ross is the pulmonary valve which is replaced and I have been researching the valves a bit.

Like you, I am extremely frustrated by the degree of controversy and personal preference in cardiology and pediatric cardiac surgery. We have sought opinions from two Children's hospital surgeons (Stanford and Seattle) and received completely different surgical plans/ preferences. Our surgeon in Seattle favors bio-mechanical valves for active young children but would consider a mechanical valve with a lifetime of coumadin for special cases.

I have also been told (by our cardiologist at Seattle Children's) that they, and a number of East Coast hospitals are licensed to do pediatric pulmonary valve replacements in the cath lab. These TPV valves are by Medtronic and are also called Melody valves. They are not indicated in all cases but are a real consideration if the case looks right.

In our son's case we are trying to avoid coumadin because he is very active and falls and bonks regularly. We are weighing up the Ross vs bio-prosthetic valve options.

I find that PDHeart - the listserv of TCHIN.org is the best source of information on pediatric cardiology experiences. However, you may get referred back here for specific valve questions.

Shannon

 

[cday]

I pray for wisdom with your decision for your child -- mechanical, tissue, Ross -- I am not at all versed in the pediatric advantages.

I'm not sure if you are concerned about differences between varying mechanicals, but I read on this site that at least 2 of the main mechanical valves were designed by the same person.

I would think that if various doctors have differing choices that would indicate that there is not a clear advantage to any of the choices. I would ask every cardiologist and surgeon this question, "What would you do if this was your child and why?". (And I would hope they had children!)

 

[Curtsmum]

Hi just wanted to say welcome. My son's condition is different he as had two mitral valve repairs and will eventually have to have a mechanical mitral valve. The choice as already been made for us and he will be getting a St Jude valve. My heart goes out to you, i feel lucky in a way that we don't have to make a choice, it must be a lot to take on. I hope you find the help you are looking for and wanted to wish you and your family the very best of luck.

 

[Lisa in Katy]

For a girl I would recommend tissue to get her through the childbearing years. Pregnancy is much more difficult with a mechanical valve. I read somewhere that homografts work best in the pulmonary position and that is why they usually use them as the second valve in Ross procedures.

If she were a boy, and it was a different valve, I would say go with mechanical because today's mechanicals are predicted to last 30 years and at 6, 36 and 66, it would mean only 3 surgeries. Today's tissue valves last 10-15 years, so at 6, 21, 36, 51, 66, 81, it would mean 6 surgeries. Each one gets a little more difficult and a little more dangerous because of scar tissue. However, tissue valves in the pulmonary or tricuspid position last longer than they do in the aortic or mitral position because of the lower pressures. That is why the Ross procedure makes sense for people with aortic valve problems. So for that particular valve, homograft is probably better in boys as well.

If they decide on a mechanical valve, I don't think Warfarin would really be that bad. Many of us have already figured out that small bumps and bruises don't generally cause bleeding issues. The hardest part would be keeping the dose straight during growth spurts, but with home testing, that shouldn't be a problem. Mechanical valves are generally the valve of choice in children to minimize future surgeries.

I actually thought that clots were more common on the mitral valve because of the increased pressures. Isn't that why our INRs are kept higher?

 

[abbanabba]

Hi Daniel - well first up, let me just say I'm a 36 y/old female born with ToF. I had a Blalock-Taussig shunt when I was 18 months old, corrective surgery when I was 5 and am now facing my first PVR. I was always told a mechanical was out of the question to replace a pulmonary valve because of the lower pressures involved and the higher risk for clotting. That said, I am also in Australia and we have far less people here with these issues and even less cardio's trained in this area, so you probably have the advantage of more experienced medical people where you are.

From my own research into pulmonary valve replacements, it seems xenografts (porcine/bovine) and homografts (human) have fairly similar outcomes - although I've read reports that suggest homografts can have shorter lifespans in younger patients (but I've also spoken to people with homografts who have had many, many years from them). Both of these seem to have a predicted 10-15 year lifespan, but things can go pear-shaped after 12 months - or they can still be going strong 20-25 years down the track! It really is such an impossible thing to predict. All I can say, is every type of valve has it's own pro's and con's, so it doesn't pay to try and "overthink" things. The best you can do is listen to the reasons your daugthers team give you and go from there.

In the meantime, if you'd like to ask any questions - please feel free to drop me a PM.... and I hope you can reach a decision you're happy with.


Best of luck,

Anna : )

 

[Duff Man]

I didn't know a mechanical pulmonary valve was even an option... are we sure we're not talking about the mitral valve?

 

[Lisa in Katy]

Here is a link to an article on Al Lodwick's website about Warfarin use in pediatric patients. Although I'm not sure that the doctors are recommending a mechanical valve for Daniel's daughter - the choice could be porcine, bovine, homograft, and all the variations of those - other parents might be reading this thread and deserve to have information from a well regarded Warfarin expert.

http://www.warfarinfo.com/pediatrics.htm

 

[ALCapshaw2]

If she were a boy, and it was a different valve, I would say go with mechanical because today's mechanicals are predicted to last 30 years and at 6, 36 and 66, it would mean only 3 surgeries.

Lisa -

Can you substantiate your statement that "today's mechanicals are predicted to last 30 years" with a reference?

As far as mechanical operations (i.e. cycles of the valve opening and closing), (all?) mechanical valves are Designed to last for More Than One Lifetime of heartbeats.

Other issues (such as Pannus Tissue Growth or Clot Formation on the Valve) may be cause for replacement in some patients.

The early St. Jude Mechanical Valve holds the record for longevity at 30 years and counting (introduced in 1977 I believe).

I am not familiar with any mechanical valve manufacturer stating that their valve is "predicted to last 30 years". If you know of such a claim, I would be interested in knowing how / where to confirm it.

 

[ALCapshaw2]

UIHCCHI wrote:

The risk of a thrombus (blood clot) on the valve of a mechanical increases each year she ages.

Can you Quote a Reference that makes this (mathematically impossible) claim?

There was a lengthy thread on this subject and a member who teaches Statistics at a Major University gave what I believe to be a Mathematically Correct Analysis.

Bottom Line: IF the risk of thrombus increased every year, eventually (assuming the patient lived long enough), they would reach a point where the Annual Risk exceeded 100%. That is a mathematically impossble outcome but an apparently unfortunate MYTH in the Medical Community which reflects a misunderstanding of Probability and how Statistics work.

The author of that post demonstrated that for a Constant Risk Level (he used 1%, 2%, and 3% in his examples), the longer the patient lived, the greater the chance that they would *eventually* have a stroke from a clot does rise (just as the chance that anyone would have an automobile accident the longer they lived) but the Risk per Year does NOT. I'll try to find the link to that thread.

'AL Capshaw'

 

[Lisa in Katy]

It's not scientific, Al, and certainly not from manufacturers. They all say that mechanical valves will last a lifetime. I'm going by what I've been told by various doctors from their real life experiences. What they say is that the valve itself should last longer than I do, but complications happen (scar tissue?, clots? loose sewing ring?) and therefore when patients ask, they say the expected is 30 years. Some patients require replacement within a few years of implantation. However, there are other people that have had mechanical valves for longer than 30 years, so it is just a prediction, not a fact. Since they are now using new & improved valves, there probably will be more people where they really do last a lifetime. I got mine at age 36, so I'm hoping it lasts at least 60 years without reop.

Here is a link to a Meditronics site with pretty much the typical answer to the question "How long will my heart valve last?"

http://www.medtronic.com/your-healt...ry/heart-valve-replacement/questions-answers/

 

[ALCapshaw2]

Here is a copy the post on "Cumulative Risk" for anticoagulated patients, by Bradley White, a Graduate Student who also Teaches Statistics at Notre Dame.

It came from a Thread entitled "I'm only 24!" in the Valve Selection Forum, originated in February 2007. It is reply #35.

[QUOTE - from Bradley White]

I cannot stress that when risk for ACT complications is given on a "per annum" basis it is not to be taken as cumulative. This is true of any statistic which is laid out as "the risk per patient year is X%". This is a quite basic principle in all biological sciences, especially medicine. I find it astounding that any surgeon would try to say the risk is cumulative!!!! It just makes no sense.
Scary how little medical professionels understand about basic statistics.

If risk were cumulative then that would imply at a risk rate of 3% at 35 years of anti-coagulation the risk would be greater than 100%. This simply isn't true or possible, it is not how statistics works. These risk events are always observed in patient years, one could not reasonable extract that data and attempt to add it up and say that after 35 years everyone would have had an event. That's simply not how statistics works. Anything whose risk is finite in a per year basis will never be 100% over any course of time. It will approach 100% but never reach it.

The cumulative nature of anti-coagulation risk is that every year there is a 3% risk. That means that every year there is a 97% chance of not having an event. As time goes on the chances that you won't have experienced an event decrease due to the recurring risk of 3% per year. You can calculate this risk by taking .97 and using the amount of years you are interested in as the exponent and then subtracting that number from 1 to figure out your chances of HAVING an event in X years:

I have made the following calculations based on a 1%, 2%, and 3% risk at 10 thrugh 50 years. The number represents the chances that you WOULD experience an event by this year if you were on ACT for mechanical valve.

AT THE 1% RISK LEVEL

10 YEARS = 9.6%

20 YEARS = 18.2%

30 YEARS = 26%

40 YEARS = 33.1%

50 YEARS = 39.5%

AT THE 2% RISK LEVEL

10 YEARS = 18.3%

20 YEARS = 33.2%

30 YEARS = 45.5%

40 YEARS = 55.4%

50 YEARS = 63.6%

AT THE 3% RISK LEVEL

10 YEARS = 26.2%

20 YEARS = 45.6%

30 YEARS = 59.9%

40 YEARS = 70.4%

50 YEARS = 78.2%

If anyone doesn't understand how I calculated those risks I can send them the excel file. The thing that stands out the most is the huge long term risk change when one goes from a 1% per annum event rate to a 3% per annum event rate. At 30 years, less than half of those at 3% per annum event rate will have not experienced an event, while at the 1% per annum event rate 74% of individuals should not have experience an event. This a significant reduction in the long term risk of anti-coagulation and represents the major medical reason why self-testing is such a huge advance since it has been shown to decrease the event rate from the 2-3% per annum category to around 1% per annum.

Trust me surgeons and doctors are not infallible, especially when it comes to math. I teach pre-med students a 300-level Fundamentals of Genetics course (decent working knowledge of statistics) at Nortre Dame and it scares me to death to think that some of them could one day be my doctor based on their complete incomprehension of statistics (among other things) at this point in their eduction.

Brad
__________________
Ross Procedure, Dr. Quintessenza, All Children's Hospital, St. Petersburg, FL -- 9/12/2000

Aortic Root and Valve Replacement with 23 mm Homograft, Dr. Joseph Dearani, Mayo Clinic, Rochester, MN -- 12/7/2006


Bradley White

[End Quote]

 

[Duff Man]

fabulous information, thanks Al. I always wondered what the real deal was about the "compounding risk" the surgeons talked about.

I guess the statistics are less harrowing when looked at from a mathematically correct viewpoint but I still wonder about the virtue of a mechanical valve in a kid, and adding to the curiosity is that the proposed valve will be in the pulmonary position. That's just my two cents though.

I wonder if this person's been back or if they went through with the procedure...

 

[Ross]

The risk of having a deathly event is possible every day for anyone on warfarin and it adds unneeded stress in pediatrics.
This topic is highly controversial from cardiologist to cardiologist but most will agree that warfarin in pediatrics sucks.

I take issue with this statement. This sounds very old school to me. We have children here in this forum that take Coumadin just as any adult would and they live their lives happily just as any adult would also.

If the medical community would pull it's act together and bother to understand Coumadin and Coumadin dosing, a whole lot of the horror stories that are being spread would cease. Fact of the matter is, the medical community as a whole does not understand Coumadin nor Anticoagulation.

We spend our lives here trying to dispell myth and this certainly is getting into the myth territory. With home testing and patients learning how to self dose, we have seen numerous times that poor advice has been given in regards to Coumadin. Some of it downright dangerous coming from the mouths of those that we are supposed to be able to trust. I'm willing to bet if the medical community would knock off whatever the problem it is that it has with Coumadin, and learn how to dose properly, you'd see an almost cease in existence of bleeding events and strokes. It's not rocket science and if a normal lay person can figure it out, why can't the professionals?

We've been over the cumulative risk thing so many times that it's bordering on insane and has been proven wrong time and time again. We have the oldest living mechanical valve patient here and he's been on Coumadin for 45 years. He's seen it all from beginning until now. Some of the stories he could tell you will show just how uneducated the medical profession really is concerning this drug.

 

[Duff Man]

Ross, you make a good point, but as you said, the fact remains that the medical community sucks at ACT management. Regarding the OP's child and discussion on the wisdom of valve type, the average 6 year old I know has just learned to do subtraction and addition, much less manage ACT. The parents will undoubtedly be intimidated by the doctors and follow their orders to have the ACT followed by a "professional", ergo the same 3% overall morbidity applies to the kid. Most kids I know wouldn't (or maybe can't) follow a doctors orders because they could only justify taking a pill for as long as they felt unwell. A parent would need to be hyper vigilant, and the child would have to take on a serious responsibility at a young age and might fail to do so. Not to mention the weekly/bi-weekly blood check would serve as another reminder of the child's defective heart.

 

[ALCapshaw2]

We have at least TWO members who are the mothers of young Children with Mechanical Heart Valves.

They are GIJanet (daughter Katie) who received a mechanical valve from well known Pediatric Heart Surgeon Dr. Bove at the University of Michigan, and Emma (daughter Chloe) in England who has an ON-X Mechanical Valve.

Here is Katie's profile (from the Member's List profile):

About gijanet
Surgery
Katie has had 5 heart surgeries: a Bt shunt at 2 weeks; Bilateral bidirectional glenn at 12 months; repair of common AV valve at 3 years; then our 2for1 heart surgery sale: valve re-repair & extracardiac fontan, then replacement of common AV valve a

Heart History
heterotaxy syndrome w/situs ambiguous, polysplenia, dextrocardia, malrotation of intestines, complete AVSD, DORV, BSVC, L-TGV, IIVC, PS, leaking AV valve

Medications
Captopril; Coumadin; Aspirin

Location
Arlington, Tx.

Interests
Marvin the Martian & the other Looney Tunes characters, Dora the Explorer, Strawberry Shortcake, My Little Pony, and the Sesame Street gang

Occupation
Have mastered my ABC's and have learned to read quite well.

Referral
CHD list

Signature
Janet, mom to Trip & Katie (my CHD child)11-19-00; heterotaxy syndrome w/dextrocardia, situs ambiguous, polysplenia, CAVSD, DORV, L-TGV, BSVC, PS, IIVC, & a leaking common AV valve (mitral & tricuspid are merged); now 5 surgeries under her shirt; we took advantage of the 2 for 1 OHS sale on 7/12/05 at UofM by the gifted Dr. Bove; fontan & annuloplasty of common AV valve; then valve replacement w/a Carbomedics prosthetic valve

End of Katie's Profile
-----------------------

Here is a post from Emma:

Quote: My daughter Chloe has the on-x valve. Hers is an 25mm and was put in mitral position when she was just 18 months old with a hugely swollen heart. It's the smallest valve they do and her surgeon told me it's 'small adult' size.
xxx
__________________
Chloe is my heart child born 31/10/99 with COMPLETE AVSD. 3 OH surgeries. RBBB, mild mitral & and tricuspid leak. Mitral valve replacement - ON-X 25mm. On enalapril & warfarin and doing well! Uses coaguchek.
'Some people only dream of angels... I've held one in my arms'. (Callum 26/10/07)
http://vampyme.blogspot.com/

End Quote
------------

Both Children are doing well and leading fairly normal and active lives per their parents.

 

[ALCapshaw2]

My daughter will be having a pulmonary valve replacement in December. She was born with Tetralogy of Fallot and had a full repair done when she was 10 weeks old. Now, 6 years later, her right ventricle (RV) has expanded to a dangerous size and the docs want to operate. I understand the need for the surgery, what I'm overwhelmed with is the various valve choices there are. Even more frustrating is that each surgeon uses a different valve! Yet all the docs can't give us any prediction as to how long any of these valves will last in our child's heart. Can someone direct me to a good website or share their child's story so I ask more in depth questions of these surgeons? Thank you!

For the "Latest and Greatest" in Mechanical Valves from Jack Bokros, Ph.D. (who was involved in the design of the pyrolytic valve leaflets of St. Jude, ATS, Carbomedics, and now On-X valves), see www.heartvalvechoice.com and www.onxvalves.com

You may contact Catheran Burnett, RN, who has held various positions with Carbomedics, St. Jude, and now On-X at 888-339-8000 ext. 265. She can probably answer many of your Questions and probably knows most of the Pediatric Surgeons (or at least the ones who use On-X Valves). Before going into the Valve Business, Catheran was a Surgical Nurse in Cardiology at Baylor University in Texas and worked with the famous Dr. Debakey.

 

[Ross]

Ross, you make a good point, but as you said, the fact remains that the medical community sucks at ACT management. Regarding the OP's child and discussion on the wisdom of valve type, the average 6 year old I know has just learned to do subtraction and addition, much less manage ACT. The parents will undoubtedly be intimidated by the doctors and follow their orders to have the ACT followed by a "professional", ergo the same 3% overall morbidity applies to the kid. Most kids I know wouldn't (or maybe can't) follow a doctors orders because they could only justify taking a pill for as long as they felt unwell. A parent would need to be hyper vigilant, and the child would have to take on a serious responsibility at a young age and might fail to do so. Not to mention the weekly/bi-weekly blood check would serve as another reminder of the child's defective heart.

Kids are not stupid. We presume they cannot think for themselves and so often we presume wrongly. Granted 6 is young, but if they're taught day one about the seriousiness of their illness, they too will grasp hold and take some of the responsibility for their health.

My problem is with the "Deathly" message given. I can't think of anything more deadly then a professional not knowing what their doing and lord knows we see it everyday in here. I want to see the medical community take ownership of their wrongs and stop dumping it on the drug.