Papillary muscle surgery

Our grand-daughter, age 8 received an artificial mitral valve at age 5, she has fairly severe Marfan's syndrome.
Her latest cardiac work-up showed a very thinning, fragile papillary muscle and her parents have been told
that there is nothing to be done. They requested that she be put on a heart transplant list but were told that
this was not a possibility.

My question: Should the parents seek a second opinion? It seems to me that papillary muscle surgery is
not uncommon, and secondly, why would the child not be a candidate for heart transplant?

Thank you for your opinion,
Gail

[Cleveland Clinic]

This is a very complex question and I would absolutely suggest that you seek out an experienced cardiac transplant cardiologist. These specialists are responsible for working out who will benefit from a transplant and who may not. If she indeed had mitral valve surgery then the papillary muscles may in fact become thin or atretic because they are not connected to any valve, as it was replaced. This is usually the problem with valve surgery: the ventricle tends to dilate because the valve is held only by its suturing ring, and why mitral valve repair is preferable. If you are close and/or would like our professional opinion in consultation call 216 444 2200 and ask for an appointment with Dr. David Taylor who is the head of our cardiac transplant unit. He may be able to assist you best.