This Baby Can’t Breathe When He Sleeps – And He Needs Your Help

Six-month old Yatharth is suffering from a rare genetic disorder.

(Photo: Sameeksha Khare/FIT)

(Note for crowdfunding: “We are looking for your support to save our baby’s life. If you would like to donate some amount and share this link as much as you can, we would be grateful. Your little help can save our baby and our family’s happiness.” Click here for the link.)

“We never know whether our child will live the next moment or not because you never know when he stops breathing.”

He’s six months old. At that age, newborns love to sleep their way through life. However, for Yatharth, that’s potentially fatal. His family members take turns to keep a watch on him through the night to make sure they intervene the moment he stops breathing. If he starts falling into deep sleep, they wake him up.

When we entered his room with our camera set up to shoot, just like any other kid, he was fascinated with our portable light and couldn’t stop smiling. “See, you can’t tell that anything’s wrong with him, right?” quips his grandmother. “We had so many plans, I wanted to get him toys, but he just has these around him now,” she says pointing towards the oxygen cylinder and mask.

Yatharth plays with his grandparents.(Photo: FIT)

Six-month old Yatharth 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 around 1,300 cases so far throughout the world.

His mother Meenakshi recalls that he was born 34 weeks premature but had no complication at birth. “We lived like a happy family, until one day it 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.

Meenakshi, 29, Mother

(Photo: Shiv Kumar Maurya/FIT)

The child was earlier admitted in Sir Ganga Ram Hospital after he had several apnea attacks. Dr Dhiren Gupta, Senior Consultant, Paediatrics explains “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 stabilised 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

So what does Yatharth’s future look like?

Dr Gupta breaks it to us – “There's no treatment for this. All over the world, there's no treatment. In this, we can only save the child and prolong his life, but not cure him completely.”

“There are only two options for us,” explains Yatharth’s father, 31-year-old Praveen Dutt, an accountant with a private firm and the sole earner in the family of five.

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.

Praveen, 31, Father

“We’re a middle-class family, we can’t afford this kind of money. We've already spent Rs 6.5 lakh in the last couple of weeks at Ganga Ram Hospital. We've used up whatever savings we had.”

The father continues and says with a lump in his throat, “if he doesn't get proper funds for the surgery, in time, then I don't think he'll survive.”

Their Plea to the Govt, Media and Everyone In the World

“Please help us save our baby.”

They approached both the state and the central governments, but to no avail. They’re also trying to crowdfund the money.

“We urge the government to help us, and to the media to spread the word so that people know about our case and can help us convince the government to provide help,” says Meenakshi.

“And to everyone who’s listening to us, please help us in whatever way you can. If you can offer any amount of money for his surgery, or even help us spread the word, we’ll be grateful.”

Video Editor: Varun Sharma and Vishal Kumar
Cameraperson: Shiv Kumar Maurya and Abhishek Ranjan