Isfahan
Member
My son is 20 months old and has complex left-side heart defects:
1) Repaired hypoplastic aortic arch
2) Repaired coarctation of the aorta
3) BAV - mildly stenotic and slightly thickened leaflets
4) Stenosis below AND above the valve (critical level)
5) Parachute mitral valve, small side of normal (no regurg at this point)
We have received two surgical opinions both of which contain aortic valve replacement as an option if the valve cannot be saved. One surgeon recommends a bio-prosthetic valve, the other opposes this opinion because:
"we are really concerned about the Ross-Kono for patients with a bicuspid aortic valve (BAV). It used to be thought that BAV was an isolated phenomenon but current dogma is that it is more of a global tissue abnormality and we have seen a fair bit of literature to show that patients with BAV have early deterioration of the (pulmonary valve) PV in the aortic valve (AV) position because it was never meant to do that sort of work in the high pressure AV position and it has similar deficiency as the BAV in terms of tissue composition.
so people are feeling more and more uncomfortable about doing the RK procedure on these patients. If you call around you will find people willing to do it, but its not widespread anymore."
We are uncomfortable with the Ross because our son has so many left-side issues anyway that we are worried about including his pulmonary valve in his pathology BUT we respect the surgeon who has recommended it.
Does anyone have advice FOR YOUNG CHILDREN regarding valve replacement options with BAV - our major considerations are bio-prosthetic vs Ross-Kono.
Thanks
Shannon
Mother to Wren with Shones Syndrome (20 months) and Frost (HH)
Heart & Family blog:
http://echobaby.blogspot.com
1) Repaired hypoplastic aortic arch
2) Repaired coarctation of the aorta
3) BAV - mildly stenotic and slightly thickened leaflets
4) Stenosis below AND above the valve (critical level)
5) Parachute mitral valve, small side of normal (no regurg at this point)
We have received two surgical opinions both of which contain aortic valve replacement as an option if the valve cannot be saved. One surgeon recommends a bio-prosthetic valve, the other opposes this opinion because:
"we are really concerned about the Ross-Kono for patients with a bicuspid aortic valve (BAV). It used to be thought that BAV was an isolated phenomenon but current dogma is that it is more of a global tissue abnormality and we have seen a fair bit of literature to show that patients with BAV have early deterioration of the (pulmonary valve) PV in the aortic valve (AV) position because it was never meant to do that sort of work in the high pressure AV position and it has similar deficiency as the BAV in terms of tissue composition.
so people are feeling more and more uncomfortable about doing the RK procedure on these patients. If you call around you will find people willing to do it, but its not widespread anymore."
We are uncomfortable with the Ross because our son has so many left-side issues anyway that we are worried about including his pulmonary valve in his pathology BUT we respect the surgeon who has recommended it.
Does anyone have advice FOR YOUNG CHILDREN regarding valve replacement options with BAV - our major considerations are bio-prosthetic vs Ross-Kono.
Thanks
Shannon
Mother to Wren with Shones Syndrome (20 months) and Frost (HH)
Heart & Family blog:
http://echobaby.blogspot.com
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