My son, Kinan, is 21 months old and underwent surgery for a coarctation of the aorta and for mitral stenosis a month ago in Great Ormand Street Hospital in ...Read more
My son, Kinan, is 21 months old and underwent surgery for a coarctation of the aorta and for mitral stenosis a month ago in Great Ormand Street Hospital in London. His coarctation was resolved for the most part but the mitral valve was described as dysplastic and arcade like. The medical team are now recommending that he undergoes another surgery within a month to replace his valve with a mechanical valve. We are exploring other options and opinions around another repair or possibly a melody valve in the mitral position. Any thoughts on this? The idea of monitoring his INR at this age is not sitting well with us. Also, I know this is more of a question for the future; I’m aware of the PROACT Xa trials for patients with On-X aortic valves, but does anyone know if these trials will consider patients with On-X mitral valves? It seems more difficult to find research and information about mitral valves than it is for aortic valves. I’m trying to find some hope for my son in this area but struggling to find anything.
Deena Z Hi Hassan, so sorry to hear about your son, Kinan. Must be on your mind all-the-time. One of the bes ... Read more
Deena Z Hi Hassan, so sorry to hear about your son, Kinan. Must be on your mind all-the-time. One of the best mitral valve repair surgeons in the US and world is David Adams in New York City, USA. (Dr. Adams repaired two of my valves five weeks ago.) You might want to contact his office for a second opinion. He should able to be visit with you via teleconference, email, etc. Here is more information: https://www.mountsinai.org/profiles/david-h-adams
I would also contact the Cleveland Clinic in Ohio, USA. It has the highest overall heart surgery rating in the USA and one of the top in the world.
Others on this website may be able to offer more specific information, as well.
Phyllis Petersen How awful for you! Prayers for solutions that will allow your son to live a long and mostly normal li ... Read more
Phyllis Petersen How awful for you! Prayers for solutions that will allow your son to live a long and mostly normal life. You all have such a hard road ahead.
Hello Hassan, I can’t even imagine how you and your wife are feeling having to worry about your lit ... Read more
Hello Hassan, I can’t even imagine how you and your wife are feeling having to worry about your little Kinan. Hoping Deena was able to give you a source for your quest. May God bless you all and you find the right help for your son. Blessings
Dylan Kempers Hi Hassan. Sorry to hear about Kinan's situation. As Deena says above, Cleveland Clinic is considered ... Read more
Dylan Kempers Hi Hassan. Sorry to hear about Kinan's situation. As Deena says above, Cleveland Clinic is considered one of the best in the world in cardiac matters. Since you are in London, you might want to try contact the new Cleveland Clinic in London. Disclosure: I don't know what kind of experts and/or facilities they have. https://clevelandcliniclondon.uk
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Hassan El Amine Thank you all for your support. We are looking into Cleveland Clinic. We live in Dubai and there is a ... Read more
Hassan El Amine Thank you all for your support. We are looking into Cleveland Clinic. We live in Dubai and there is a Cleveland Clinic in Abu Dhabi. My wife and I are from Switzerland and Belgium respectively. We’re flying to Zurich for a second opinion. It’s been really hard with Covid. I was in quarantine during the surgery. I forgot to mention that my wife is 19 weeks pregnant. Less than 2 months ago I had no idea what a mitral valve was. I’m trying to stay positive despite the adversity. I’m grateful that we caught it.
Rita Savelis The mitral valve is tricky, much trickier than the aortic (I had double replacement). Mitral tissue v ... Read more
Rita Savelis The mitral valve is tricky, much trickier than the aortic (I had double replacement). Mitral tissue valves don't exist in the size needed for a small child. But I know little about child hearts. I feel for you. The Cleveland Clinic in Abu Dhabi is a good hospital and I'm sure that they can give you a second opinion as well as the Zurich hospital, in which you may feel more confident as it is your country. Wishing the best for your family and Kinan.
I am from: Dubai, United Arab Emirates
I would also contact the Cleveland Clinic in Ohio, USA. It has the highest overall heart surgery rating in the USA and one of the top in the world.
Others on this website may be able to offer more specific information, as well.