A six-month old baby is suffering from a rare genetic disorder which might prove fatal for him if he goes into deep sleep. The condition, known as Congenital Central Hypoventilation Syndrome (CCHS), is a rare genetic respiratory disorder with only 1,000-1,200 cases so far throughout the world.
In this condition, the patients begin to hyperventilate (start breathing at an abnormally rapid rate) and lose control over their breathing and ventilation during sleep.
Yatharth has been admitted at Sir Ganga Ram Hospital in New Delhi where his parents and his grandparents are taking turns to ensure that he doesn’t get into deep sleep.
As per a report in The Indian Express, the doctors at the hospital have proposed that Yatharth be kept on artificial ventilation at night and a diaphragm-pacing system be implanted which will use the baby’s ‘diaphragm as the respiratory pump’. Unfortunately, Yatharth might need to depend on the pacing system throughout his life.
Speaking to the Indian Express, Dr Dhiren Gupta, senior consultant, Division of Paediatric Emergency, Critical Care and Pulmonology and Allergic Disorder, Sir Ganga Ram Hospital, said:
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 automatically breathe. During sleep, it’s almost like the patient forgets how to sleep.
The surgery is estimated to cost Rs 38 lakh and Yatharth’s family who lives in east Delhi’s Karawal Nagar say they cannot afford the cost.
His father, Praveen Dutt, who is an accountant with a private firm, told The Indian Express that he already had a debt of Rs 6 lakh on his head.
My life has changed drastically ever since he was born. How can my son live on a ventilator for the rest of his life?
The family hopes to manage with oxygen cylinders and a fingertip pulse oximeter which will help measure the oxygen levels in Yatharth’s body. They have to constantly monitor for a ‘blue tinge on the infant’s skin and lips’ showing that his body was running out of oxygen.
His mother, Meenakshi, told The Indian Express that Yatharth’s first experience of breathlessness was on 25 July 2018, just 16 days after his birth when she had to ‘blow air through his mouth to revive him’.
The doctors told me he was born prematurely and has a weak lung, which will develop as he grows. But since then, Yatharth has had multiple episodes and I keep blowing air through his mouth.
The Department of Paediatric Emergency and Critical Care’s report stated that “the child had an episode of apnea when he was four months old and required a bag and mask resuscitation. Contracted a respiratory infection and admitted at a private hospital. He had an episode of cardiac arrest requiring CPR. Possibility of central hypo ventilation was kept and genetic testing… was positive”.
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