In Delhi hospital, parents keep vigil as deep sleep can mean death for their 6-month-old

Yatharth has been diagnosed with Congenital Central Hypoventilation Syndrome (CCHS), a rare genetic respiratory disorder with around 1,000 to 1,200 cases globally. Also known as Ondine’s curse, from Greek mythology, the patients hyperventilate or become apnoeic — they cease to breathe — as they fail to control their breathing and ventilation during deep sleep.

Doctors at the hospital have recommended artificial ventilation at night and the surgical implantation of a diaphragm-pacing system, which generates breathing using the child’s own diaphragm as the respiratory pump. They say Yatharth may need this his whole life, apart from adequate aerobic exercise later on.

“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,” says Dr Dhiren Gupta, senior consultant, Division of Paediatric Emergency, Critical Care and Pulmonology and Allergic Disorder, Sir Ganga Ram Hospital.

Yatharth’s parents say they cannot afford the surgery, which is estimated to cost Rs 38 lakh, and hope to make do with an oxygen cylinder and a fingertip pulse oximeter to measure oxygen levels in the infant’s body.

The family lives in east Delhi’s Karawal Nagar and the boy’s father, an accountant with a private firm, says he has already run up a debt of Rs 6 lakh after borrowing money from friends and colleagues. “My life has changed drastically ever since he was born. How can my son live on a ventilator for the rest of his life?” says Praveen Dutt, 31, the father.

Yatharth had his first episode of breathlessness 16 days after he was born on July 25, 2018, at St Stephen’s Hospital, when his mother had to blow air through his mouth to revive him. Five months later, he was shifted to Sir Ganga Ram Hospital.

“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,” says Meenakshi, 29, the mother.

According to a report by the Department of Paediatric Emergency and Critical Care, “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”.

When the doctors informed the family about the cost of the implant, and that the procedure would be undertaken in the USA, the father lost all hope but the mother kept fighting. She started pulling in all-night shifts at the hospital with her father and sister, while her husband started working night shifts.

These days, Yatharth’s aunt, Neeru, takes the first shift. “I don’t even have coffee because then I will have to go to the bathroom. There is a fear that in those few minutes, he may die,” she says.

Meenakshi, who spends the rest of the night with her son, wakes him up every few minutes. “He gets very irritated. When he wakes up, I play some music and play with him. He goes back to sleep and I just sit and stare at the oximeter,” she says.

Ondine’s curse got its name from the daughter of Poseidon, the mythological Greek god of the sea, who was abandoned by the human she fell in love with. The man was then cursed by Poseidon — that he would forget to breathe if he slept.