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Tetrology of Fallot diagnosed during pregnancy

Hello!  I am a 32 year old and in my 6th month of pregnancy.  We had a fetal ecocardiogram done at 24 weeks and our baby was diagnosed with Tetrology of Fallot (of moderate severity).  We were totally unprepared for this and are still trying to come to terms with what lies ahead for us and for our baby.  I come to you because through some investigation I found the Cleveland Clinic to be ranked no. 1 in cardiology and heart surgery.  My question is two-fold.

(1)  What is your experience with TOF?  Do you see many patients with this defect?  Do you operate on babies with TOF?  From what we have been able to read so far (and from what the cardiologist who performed the eco told us), this is a condition that is treatable and with favorable results.  I would like to know your opinion.

(2)  We live in Caracas, Venezuela but have decided to have the baby in the States (I am American) and have all treatment done there.  We are planning to travel to the States in order to get a second opinion and to have a repeat eco.  Our insurance company has a list of participating hospitals.  The Cleveland Clinic in Cleveland does not appear on the list, however, the Cleveland Clinic of Florida does.  Does the clinic in Florida also specialize in cardiology?  Could you recommend a pediatric cardiologist associated with the Cleveland Clinic so that we may contact him/her for a consultation?

I appreciate all of your help and I thank you for this opportunity.  We feel that the best advantage we can give our baby is to be as prepared as we possibly can.  Thank you, again.

Sincerely,

Donna P.
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Avatar universal
Lynn, thank you very much for your message.  I would like very much to ask you some questions, however, your e-mail address was unclear.  Could you please post it again?
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Avatar universal
Hi. I have TOF, and am 31yr. old now. I am a patient at CCF.I also see a pediatrician there. Your child would be in wonderful hands.The doctors there are a true blessing. I wish you much luck.  if you have any questions, I would be happy to reply.I wa obviously born with TOF and things have come a long way, in these past few years. My email address is lena31_1999_lena31_99
LYNN.
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238671 tn?1189755832
You are very welcome. Good luck.
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Avatar universal
Thank you very much for your quick response and your helpful response.
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238671 tn?1189755832
We here at the Cleveland Clinic in Cleveland have lots of experience with TOF and surgery for that condition, with excellent surgical results. I would recommend coming here (to Cleveland) or going to a large university medical center that your insurance will cover. While our affiliated institution in Florida does provide excellent care, the complex condition that your unborn child has requires a more sophisticated level of care.
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