The disease is an inborn malformation, in which the heart is located either partially or totally outside the body.
“The doctors have said that we should leave her the way she is because there is no treatment of this problem available in Pakistan,” said the disheartened father.
The girl was born in the government hospital in Korangi No 5 on the evening of November 2 and was shifted to the Jinnah Postgraduate Medical Centre (JPMC) the same night when it was discovered that her heart is partially outside her body.
The newborn was soon shifted to National Institute of Cardiovascular Diseases (NICVD) for medical tests and ultrasound to ascertain if there is any possibility for her treatment. “The doctors’ team at the hospital gave up the hope of her treatment as her surgery is not possible in the country,” lamented Zubair, adding that the doctors reasoned that when surgery was performed on two other such cases in the past, the children could not survive.
The newborn was sent back to National Institute of Child Health (NICH), where she is in an incubator in the Intensive Care Unit. She is being given oxygen, which is helping her to breathe properly as she has been facing difficulty in breathing since she was born.
“It is painful to see that we can’t hold her in our hands,” cried the father, explaining how he has been to different hospitals during the last week but has not lost the hope.
Zubair, who earns Rs400 daily after working as a salesman, lives in a two-room house with his mother, brother, wife, son and daughter. “I cannot afford any treatment as I am very poor,” he said. “I have done whatever I could to save my daughter.” The previous case of Ectopia cordis was last reported on April 28 this year when a baby boy was born in Orangi Town with the same condition. The surgery did not succeed. NICH director Dr Jamal Raza said the disease can be treated in other countries where people born with it have been treated, are alive and are living healthy lives.
Published in The Express Tribune, November 11th, 2016.
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