Doctors Operate on Infant Born With His Heart Outside His Chest

Thanks to Gore-Tex fabric and a six-hour operation, little Naseem Hasni will be able to lead a nearly normal life despite being born with an extremely rare and life-threatening birth defect. Naseem was delivered by Caesarean section on October 31 at Holtz Children’s Hospital in Miami. The congenital defect he was born with, ectopia cordis, is a situation in which the heart grows outside of the body, and the chest wall and sternum do not develop normally.

Naseem’s mother, Michelle Hasni, began feeling unusual movement form the baby in late September. Hasni, 33, said that Naseem "was having hiccups, but it was constantly and it was every day. I wasn’t sure what the movement was." An ultrasound discovered Naseem’s condition.

Doctors delivered the baby at 36 weeks, a few days early than his expected due date, so they could control the delivery. Surgeons made a larger incision than normal so that the heart would not be squeezed or brushed against any part of the womb while the infant was being removed. Naseem had developed normally in all ways other than the heart defect, weighing in at 9 pounds, 2 ounces. But his heart was sitting like a ripe plum on top of his chest, beating normally, with the aorta slipping back underneath the skin.

During the operation, surgeons used a piece of Gore-Tex to wrap Naseem’s heart, then enclosed it with a piece of Naseem’s own skin, to substitute for the missing pericardium he was born without—the sac of skin that encloses the heart. The newly wrapped heart was encased in his chest, and in a few weeks, he will be fitted with a piece of protective plastic to wear over his chest. A few months from now, surgeons will graft pieces of Naseem’s own ribs across his chest to create a new sternum.

"He’s not going to be able to play certain kinds of sports where a blow to the sternum to you and me wouldn’t be a problem, but in him it would be. So I think some competitive sports are going to be out," said Dr. Eliot Rosenkranz, a cardiothoracic surgeon. "But he’s going to be able to participate in other sorts of activities."

Ectopia cordis occurs only 5 to 8 times per 1 million live births, and the survival rate after surgery is usually less than 50%, according to Naseem’s doctors, who had initially thought the child would not survive until Thanksgiving. But thanks to the successful surgery, he could be home with his family as early as Christmas.