This is the name of the congenital birth defect which caused Naseem Hasni's heart to be outside his chest. He was born on October 31, 2006 and has been at a Miami children's hospital ever since. (Miami Herald)
On Wednesday, the first of many corrective surgeries took place to try to correct the defect. Now, a thin film along with a thin membrane of his own skin cover his beating heart. Soon, he will be fitted with a plastic chest to protect the heart. It's optimistic, but Naseem may return home by the end of December in time for the holidays.
This defect is so rare that it occurs in only eight in one million babies. Most are stillborn or do not survive the corrective surgery. One can beat the odds, however. I found the story below about Christopher Wall who was born in 1975. Chris set the record for living the longest with the heart outside the chest. This is from a TV broadcast in 1998 and the piece is about 8 minutes long. Very inspiring story.