Web Desk: A six-month-old Yatharth from India is suffering from a rare genetic disorder which might prove fatal for him if he goes into deep sleep.
The condition is known as Congenital Central Hypoventilation Syndrome (CCHS), which is a rare genetic respiratory disorder with only around 1,300 cases so far throughout the world.
According to his mother, he was born 34 weeks premature but had no complication at birth. She said, “We lived like a happy family until one day is all changed.”
“Suddenly, when he was 3 months old, he had an apnea attack. I was feeding him at 2 in the night and he suddenly cried, then held his breath, his body went blue and he became unconscious. At that time, we didn’t know whether he’d live or not.”
According to a doctor, “Hypoventilation means that the patient forgets to respire – inspire and expire. His respiratory system and his brain are not working simultaneously. It tries to send the signal to the brain but brain doesn’t perceive. So the brain doesn’t act and doesn’t let his diaphragm expand.”
But the parents brought him back home when his condition stabilized a bit because they don’t have more money to keep him in the hospital.
The surgery to keep him alive costs more than Rs 50 Lakh IND.
There is no treatment for this. The parents have only 2 options. The first option is home ventilation for his entire life. Second is the diaphragm pacemaker surgery. It’s easy to say that you can go for home ventilation but it’s not possible in real life. And the pacemaker costs Rs 40-50 Lakh IND.