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Rare Disease Day: Sleeping can be life-threatening for these newborns with CCHS | Mumbai News


For new parents, the tranquility of seeing their newborns peacefully asleep is a precious moment. However, for a couple in Bangalore, the experience is bittersweet. Their five-month-old twins, Swara and Shaksi, face a unique challenge. Falling into deep sleep can be life-threatening for the twins due to a rare disease— CCHS (Congenital Central Hypoventilation Syndrome). Since their birth, the twins have relied on round-the-clock ventilators, an essential lifeline until they reach the age of two.

While no official records are available, according to the Rare Disease Organisation, approximately 10 such cases have been reported in India.

After spending five months in the hospital’s PICU, the twins finally returned home last week, requiring a makeshift ICU in one room with a ventilator, oxygen concentrator, and humidifier. The infants rely on portable ventilation 24/7. “Without the ventilator, we can only hold the babies for a maximum of 30 seconds,” Ameet M Nandihal, the twins’ father and a software engineer told The Indian Express on Rare Disease Day. “We must lift them with an air pipe connected to the ventilator,” he added.

During sleep, the brain usually signals the lungs to function. However, with CCHS, a rare genetic disorder, the brain fails to send sufficient signals for breathing. This condition affects the autonomic nervous system, disrupting the control of breathing, especially during sleep, resulting in low oxygen levels. “Unlike other parents, every time they drift into sleep, our worries keep us awake. We find ourselves constantly checking for the reassuring movement of their little hearts,” he added.

They require a ventilator for life, mainly at night. Despite being normal during the day, there’s currently no medicine or alternative to avoid nighttime ventilator use.
As the newborns are too little, and keeping them constantly on ventilation through a pipe in their noses is a challenge, the doctors have performed a tracheotomy—a medical procedure that involves creating an opening in the neck to establish a direct airway to the trachea (windpipe).

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“The babies can’t even move properly due to the wire, and we can’t even hug them, which breaks our hearts,” he added.

The twins would be required to be on a ventilator round-the-clock until they turn two years. “Until they have developed the ability to understand their sleep patterns, they will have to live with the artificial support system,” he added. “But even then, everytime they sleep, they would require ventilators to survive in their sleep,” he said.

Unfortunately, there’s no available medicine, preventing the couple from claiming Rs 50 lakh under the Rare Disease policy. They’ve already spent over Rs 60 lakh. But they would require another Rs 2 crore in the next two years for the babies.

Rare diseases are debilitating life-long conditions and approximately 95 per cent of them have no approved treatment. It is estimated that only one in 10 patients receive disease-specific treatment. Access and availability to drugs is key to reducing mortality linked to rare diseases. Even in cases where drugs are available, they are prohibitively exorbitant.

As part of the global parents’ group for CCHS, the couple empathises with others facing similar challenges. “Initially, we felt powerless, unable to assist our daughters. We were unaware of Rare Diseases and the impact on thousands of children worldwide due to the absence of life-saving drugs and medicines,” shared Ameet.





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