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Without a ventilator, a family struggles to keep their child alive

Ventilator. Image credit: 123rfIn Delhi, a boy is alive and breathing only because his family is pumping air into his lungs.

Three-year-old Farhan is on a manual ventilator for a week as he battles for his life at Lok Nayak Hospital. Farhan suffers from a rare neurological disorder called Leigh syndrome. However, the hospital lacks a spare ventilator, forcing his parents to keep their son alive using an Ambu bag. An Ambu bag is a handheld device commonly used to provide positive pressure ventilation to patients who are breathing or not breathing adequately.

The hospital faces a dilemma. “The child is brain dead and his condition is irreversible. Only his heart is working, and he is breathing with the help of manual ventilation,” said Dr Kishore Singh, medical director of the hospital. “This is a case of moral versus ethical issues. If we put him on a ventilator, we will have to sacrifice the life of a child who will have better chances to live as compared to Farhan.

“The family is adamant to keep Farhan breathing, taking turns every fifteen minutes to make sure he lives”

The hospital may be in a catch-22 situation as Leigh syndrome is a fatal disease, characterised by progressive loss of mental and movement abilities.The syndrome typically results in deaths within two-three years.

The family is adamant to keep Farhan breathing, taking turns every fifteen minutes to make sure he lives. The Delhi High Court has taken cognisance of the matter and directed the hospital to provide Farhan with a ventilator. However, the boy and his family continue to wait.

“This is the condition of access to healthcare in India”

Dr Uma Jhamb, head of the department at the hospital, said: “We have kept him on standby and he will be shifted to the ICU as soon as a bed is available. There are six-seven beds in the paediatrics ICU, and all are running full. We don’t have enough beds in the ICU to deal with the number of patients who come from various parts of Delhi.”

This is the condition of access to healthcare at one of the national capital’s biggest hospitals. A dying child languishes on the waiting list as his parents struggle to ensure he keeps breathing.

The government’s blockbuster Ayushman Bharat scheme, which aims to make healthcare more accessible should first cater to improving health. Cases such as Farhan’s highlight one of the major issues facing public health in India today: healthcare equipment. As reported by Health Issues India last year, medical equipment may actually be the biggest disparity of India’s public health system. Combined with sub-par healthcare and inadequate and/or misspent funds, it is patent to see why tragic cases such as Farhan’s often are not the exception, but the norm .

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