The father of a baby born with his heart protruding from his chest has told CNN about the 1100 km train journey he made to save his son’s life.
Chander Majhi, 24, became a father last week but he had to leave his wife behind in hospital and make a train journey from a remote region along India’s border with Nepal to the capital New Delhi. His son was born with his heart protruding from his chest, an extremely rare condition called ectopia cordis, which only affects five to eight cases in one million live births. The parents did not know about the defect until the child was born on August 25 at a government facility in Majhi’s home state of Bihar in eastern India. “We didn’t go for any (pre-natal) tests,” Majhi told CNN. Doctors at the government facility referred him and the baby to New Delhi’s All India Institute of Medical Sciences (AIIMS). Professor of cardiothoracic surgery at AIIMS, A.K. Bisoi, told CNN the baby was admitted to the hospital with dehydration and a severe infection which he probably suffered because of the arduous train journey.
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Doctors were surprised that the child had been able to survive despite so many complexities, he said. Doctors at the state-run AIIMS are now planning a complex surgery on Thursday for the boy, referred in their records as “baby of Vibha”, his mother. His heart has been covered with a synthetic membrane and infected blood fully replaced from his body, said A.K. Bisoi, professor of cardiothoracic surgery at AIIMS. Surgeons may now plan a total circulatory arrest procedure that will also involve creating a home for the heart in the chest, said Bisoi. The baby, who suffers from immuno-deficiency, will be put in a state where his blood will be cooled down to 18 degrees, (64 Fahrenheit), for a half-an-hour stage of the operation, he explained. “We could carry it out in one go if the child is able to tolerate. If not, we will do it in stages,” he said. “We are working with hope,” Bisoi remarked when asked about chances of success. And it was the same hope that drove Majhi to Delhi. “That is why I am here. There’s hope. My child is a fighter,” he said. In 2006, doctors in Florida, U.S. carried out a similar operation on Naseem Hasni who was born with his heart outside his chest. The operation was carried out immediately after Naseem was born by caesarean section at a Florida hospital. Doctors wrapped his heart in Gore-Tex, a waterproof, breathable fabric used in outdoor clothing and medical applications. His heart was then wrapped in a layer of his own skin, to substitute for his missing pericardium, the sac that encloses the heart. The heart was then slowly eased inside.
