epayne
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I'm looking for help finding treatment in the U.S. My husband (Jon) and I live in Maryland, near Baltimore. The facilities here (Johns Hopkins and University of Maryland Medical Center) are not too familiar with doing a fetal endoscopic tracheal occlusion. Jon and I have been researching the disease and possible treatments like crazy. Our doctor is recommending the fetal endoscopic tracheal occlusion, which is a surgery done in utero, in order to allow more time for the baby's lungs to develop. The baby's lungs are being smooched by his stomach, intestines and part of his liver. Don't know how much everyone in this groups knows about CDH (I didn't know anything until it was discovered in our son) but the chances for survival after birth (if you don't do something while the baby is in the womb) are pretty low for a baby in our condition. If anyone knows where there are experienced doctors doing this procedure, Jon and I would be greatful to hear about your experience and any knowledge you have had. Thank you, Elizabeth |
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