Little Muaaz will celebrate his fourth birthday on Sunday. And doctors say this is nothing less than a miracle since he is one of the few people who is surviving with Ondine’s Curse.
Little Muaaz will celebrate his fourth birthday on Sunday. And doctors say this is nothing less than a miracle since he is one of the few people who is surviving with Ondine’s Curse, medically-known as congenital central hypoventilation syndrome, where the boy literally “forgets” to breath once he falls asleep. Muaaz has to be put on ventilator every time he goes to sleep.
A tracheal pipe (inserted in the throat directly into the windpipe) supplies oxygen to his lungs. This is because, his respiratory centre (part of the brain which sends signal to the respiratory system) gets depressed when he goes to sleep. Muaaz’s father, Dr Mohammad Ahmed, an orthopedic surgeon, said that in 2003, he and his wife had their first son, who died within hours of delivery due to undiagnosed conditions. “He (the first son) had difficulty in breathing and despite efforts, we could not save him. Then, we had a daughter in 2006 and Muaaz in July 2007. However, when Muaaz showed similar signs as our eldest child soon after birth, we did not waste a minute and immediately shifted him to the nursery in Sheetla Hospital,” said Ahmed.
He added that according to known medical history, this disorder is found only in males. Muaaz survived the first two years of his life purely on ventilator. However, the huge costs compelled the family to make arrangements at home.
“Muaaz has ‘died’ close to seven times. He would suddenly stop breathing and turn blue. But then like a miracle, he returns to life,” explained Dr Akhlak Ahmed, his grandfather and a senior orthopedic surgeon. Dr Akhlak added that Muaaz had a major operation when he was six months where half of his large intestine had to be cut and removed since it had rotted due to lack of functionality. “Since he has slower development of the brain, the neural signals were not reaching major portions of his large intestine. Every time before passing stool, his stomach would swell up because of indigestion. We had to finally operate him,” said Akhlak.
However, being on continous medication since the day he was born, Muaaz has several complications. He has lost all his teeth and his immunity is very low. He also suffers from speech and hearing impairment and once he turns five, he is likely to get a pacemaker-like device for his lungs to keep them “operational” even when he goes off to sleep. “We don’t take him out of the house and discourage people who have contracted any kind of visible infection near him,” said Muaaz’s grandmother.
Akhlak added that because both he and his son (Muaaz’s father) are doctors, the boy has come so far. “There are less than 200 patients in the world — who are surviving with this disorder,” said Akhlak.