In a recent complex medical case, a premature baby who suffers from a sporadic disease can lose his life if he goes to deep sleep. The premature baby born baby has been diagnosed with a rare genetic respiratory disorder called Congenital Central Hypoventilation Syndrome (CCHS). This rare disorder affects only about 1000 to 1200 people across the globe. The baby is at Sir Ganga Ram Hospital in New Delhi. The baby is called Yatharth Dutt, as per reports by The Indian Express. Polio-Like Rare Mysterious Disease Takes Over the US; 38 Kids Affected By Now.
The reports by TIE also says that his parents are unable to have a full eight hours of sleep as they are taking turns to watch Yatharth sleep. They have to keep looking for "a blue tinge on his skin and lips" which is a sign that the body runs out of oxygen.
Dr Dhiren Gupta, senior consultant, Division of Paediatric Emergency, Critical Care and Pulmonology and Allergic Disorder, Sir Ganga Ram Hospital said to The Indian Express -"In more than two decades, I have come across just three such cases. This is a very rare syndrome present from birth where the patient fails to breathe automatically. During sleep, it’s almost like the patient forgets how to sleep."
What is Congenital Central Hypoventilation Syndrome (CCHS)?
A rare autonomic nervous system disorder, Congenital central hypoventilation syndrome (CCHS), affects the breathing system of the body. This disorder can cause a person to hypoventilate(respiratory depression) especially during sleep, and that causes the patient to fall short of oxygen. This also creates a buildup of carbon dioxide in the blood and can turn fatal in no time. There are two forms of this disorder, one of which begins from shortly after birth and the other form is milder and usually occurs in toddlers. Infants suffering from this usually hypoventilate upon falling asleep, and that makes sleeping extremely dangerous. Infants hypoventilating show visible symptoms such as the bluish appearance of lips and skin. Other symptoms may include irregular heart-rate, profuse sweating, low body temperature and blood pressure.
The treatment of Congenital central hypoventilation syndrome (CCHS) can be very expensive, and in the case of Yatharth, the estimated cost comes upto Rs 38 lakh. Doctors, however, have recommended "artificial ventilation at night and the surgical implantation of a diaphragm-pacing system", as per reports by TIE.