Pulmonary Valve Choice for Child

[goffrey]

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

I spoke with Dr Lock who is part of a clinical trial involving the transcatheter pulmonary valve replacements and stenosis and scrarring is actually not an issue...In fact it gives a rim for the new valve to sit on....Only 3 centers are involved in the clinical trial....Boston Children's, New York Columbia Presbyterian and Rush in Chicago....Many kids with complex TOF have undergone successful transcatheter valve replacements. A child needs to have a large enough pre-exisiting valve to qualify...Unfortunately my son has a 16mm valve which is considered "borderline"....

 

[Ross]

Daniel made this post and has never been back to read it. I sent him an email just now inquirying. Hopefully he'll be around to answer.

 

[DanielCohen]

Thank you for all the advice, links and opinions. We have focused on 3 surgeons (UVA, UT Southwestern Medical, & CHOP). They are each pretty consistent in the valve selection (St. Jude EPIC, CE Perimount Magna or Homograph). The lack of consensus comes after they examine my daughter's MRI. Between cardiologists and surgical cardiologists, they are almost split 50-50 when my daughter should have her surgery. Half say, now (during her Christmas break), the other half say she can wait till summer. I don?t want her to have surgery until she absolutely needs it, but I don?t want to make a mistake and wait to long and do irreparable harm to her right ventricle. To be proactive, she is on the surgical calendar of two surgeons in December and we are going to CHOP in the next two weeks to have another surgical consult. We are leaning the advice and words from individuals like yourselves and the grace of God to guide us. I let you all know more when I know more.

Daniel

 

[abbanabba]

Thanks for the update Daniel. And you could drive yourself crazy thinking about the what-if's when it comes to decisions you could've/should've made. I think the best thing to do is to make a decision and then stand by it. Over-thinking generally achieves little except to make your head hurt (which isn't to say you shouldn't be as thorough as possible with your reseach, only that you should focus on what you eventually decide to do, rather than what you didn't).

Hope the next consult gives your a clearer direction.


A : )

 

[George]

Wishing both of you all the best of luck with your PVR situations...from one who's been there!

 

[gijanet]

Daniel

Daniel

To be proactive, she is on the surgical calendar of two surgeons in December and we are going to CHOP in the next two weeks to have another surgical consult.
Daniel

You sound like me! We actually sought out five opinions between Katie's first and second surgeries. Although it doesn't allay the pre-surgery anxiety, it does help with peace of mind in when and where. thanks for letting us know what's up. Keep us posted. Hugs. J.