Yatharth Dutt, a 6-month-old premature baby that is currently admitted in the Sir Ganga Ram Hospital located in New Delhi. His grandparents and parents can’t even remember the last time they slept properly, all they do is wake up the entire night to see if the skins or lips are turning blue of baby Yatharth, a sign that indicates his body is running out of oxygen.
Diagnosed with CCHS (Congenital Central Hypoventilation Syndrome), Yatharth is one of the few that are born with this syndrome. There are only 1000-1200 recorded cases of this syndrome globally, in this syndrome the patients have a hard time to breathe and they fail to control their breathing when they are asleep.
Doctors at the Sir Ganga Ram Hospital are recommending ventilation during nigh ours, which will allow the child to breathe properly. They also added that he may require this for the rest of his life.
Dr. Dhiren Gupta a Senior Consultant of the Pediatric Emergency 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.”
Doctors have also suggested a surgery, which will cost them around Rs. 38 lakhs, but the family says they cannot afford the surgery.
The father already has a debt of 6 lakh Rupees, he said he borrowed the money from his friends, colleagues, and relatives. The father added: “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 6-month-old baby had shown symptoms of CCHS when he was just 16 days old. He was born on July 25, 208 in St. Stephen’s Hospital. After 5 months he was referred and got shifted to Sir Ganga Ram Hospital.
Meenakshi mother of Yatharth Said: “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.”
A report by the Department of Paediatric Emergency and Critical Care said: “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”.
The doctors informed the family that if ever they opt to go with the surgery, it will be held in The USA. That right there made the father lose all his hope, but as a mother Meenakshi kept fighting, she started to work and did double shifts just to try to do their best and save the life of their son.
Meenakshi added: “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”
Meenakshi spends the entire night with her son, she added: “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.”