Number of patients in wait-list: 700;
Number of heart-lung machines: 1
20 children have died since Jan 1 while waiting for their open-heart surgeries at KEM Hospital. The reason: the BMC’s infamous red tape
CHILD’S NAME: Aditya PARENTS: Kanchan and Rakesh Rajat, Kandivali residents FATHER IS: a peon at a private firm WAITING SINCE: October 2012DIED ON: January 30, 2013
Nasir Sheikh spent eight months last year waiting for a call that could save his oneyear-old son Mohammed’s life. The boy had a hole in his heart and a narrow valve that hindered supply of oxygenated blood to the body. Even a little physical exertion would make Mohammed breathless and turn him blue. A simple activity like taking his daily feeds was a task.
Nasir, 30, a salesman at a small store selling mobile phones in Govandi, sold his wife’s gold to raise Rs 60,000 in May last year to list Mohammed for an open-heart surgery at the King Edward Memorial Hospital (KEM) in Parel, the only civic or state-run hospital in Mumbai with expertise in paediatric heart surgeries. Mohammed’s treatment at a private hospital would have cost the family Rs 3 lakh.
The operation was slotted for June 1. But doctors warned Nasir that because of a long waiting list, there could be delays. He was told the department had only two very old, often malfunctioning, heart-lung machines, making it impossible to carry out more than three surgeries a day. A heart-lung machine performs all the functions of a heart when the organ is removed from a patient’s body during an open-heart surgery.
The doctors noted down Nasir’s mobile phone number and said they would call with a confirmed date for the surgery. It turned out to be a long, torturous wait. Every time Mohammed turned breathless or struggled with his feeds, Nasir and his wife, Sakina, 24, would rush him to KEM, begging doctors to operate upon him. Each time, the doctors would treat the boy for a few days, prescribe medicines and send him back with a promise that they would call as soon as a slot for surgery was available.
They never called. Mohammed died on January 14. He collapsed at home after a bout of breathlessness and passed away in his father’s arms on the way to KEM.
Twenty children on KEM’s open-heart surgery waiting list have died since January 1, 2012, while waiting for their turn. On Friday, the waiting list had 700 names, nearly 80 per cent of them children in the age group of one to five. All of them were in urgent need of life-saving operations. And all of them were from families that had no option but to wait because they could not afford private hospitals.
But the queue that is killing little kids isn’t the fallout of KEM being the only public hospital in Mumbai where open-heart surgeries on children can be performed. The queue, in fact, is the result of the municipal corporation’s criminal neglect of the upkeep of hospital’s equipment.
On February 19, Mumbai Mirror reported that one of the two heart-lung machines, which had been used for 29 years – 19 years beyond its best-before date – broke down. The engineers put their hands up. It was beyond repair. The hospital’s Paediatric Cardiac Surgery Department now has only one heart-lung machine and it’s been reserved for emergencies. The term ‘emergency’ could not have a more ironic context than this because almost all of 700 kids on the waiting list need immediate attention, just as Mohammed did.
The Paediatric Cardiac Surgery Department has six surgeons. But they now manage to perform only one or two surgeries a day. With new cases getting added to the waiting list every day, KEM hospital is up against a big crisis. And it could get worse – the one heart-lung machine that the hospital is now left with has been in use for 13 years. It should have been replaced in its 10th year. It has been repaired many times and could breath its last any day now.
The hospital sent a proposal to the BMC to procure a new heart-lung machine way back in 2009. Four years later, the machine is still stuck in BMC’s ill-famed red-tape. Tenders have been called, tenders have been scrapped, and tonnes of documents have been exchanged. But there is no sign of the machine.
“Every time the heart-lung machine broke down, we would remind the officials concerned that it should be replaced. But here we are today, the machine is gone and we don’t have a replacement. I am a professional and it kills me to see these little boys and girls who I know have very little time. If I could, I would operate upon all 700 today. It’s very frustrating,” said a doctor who did not wish to be identified.
Residents of a one-room Slum Redevelopment Authority building in Worli, Sheefa and Azharuddin Ansari’s daughter Ruksar’s name was put on the waiting list in December, 2010. Their first child, Ruksar was just threemonth-old when doctors detected a hole in her heart. The Ansaris were told the girl will have to undergo an urgent corrective surgery. They borrowed money from friends and relatives and deposited Rs 60,000 with KEM.
The family was not given any date for the surgery. They were only told about the long waiting list and that they would get a call when it was their turn. Sheefa would visit the hospital almost every second day to check if a slot for Ruksar was available. She was not going to trust her mobile phone for this, it was a matter of life or death after all. “Sometime there is signal, sometime there isn’t,” she said. On every visit, she received the same response from the hospital – ‘we will call you.’
In July last year, Ruksar took ill. She was breathless and had stopped taking feeds. Doctors said she would have to be operated upon urgently. Sheefa and Azharuddin spent three days at the hospital, waiting for Ruksar to be wheeled into the operation theatre. On the third day, Sheefa was asked to not feed Ruksar because her surgery had been slotted for that day. “At the end of day, I was told some machine was not working and that the surgery will have to be postponed. The next day, Ruksar was discharged from the hospital.” Once again, the Ansaris got the same assurance – we will call you.
A month later, Ruksar died. The end was not very different from Mohammed’s – difficulty in accepting feeds, acute breathlessness, rushed to the hospital, died on the way in her mother’s lap.
In a crude twist of fate, just last week Sheefa received a call from KEM telling her that a slot was available for her daughter’s operation.
The tender floated by the BMC in 2009 for a heart-lung machine for KEM had received two bids – one from the Milan, Italy-based Sorin Group and the other from the Germanyheadquartered Maquet Gentinge Group. It took two years for the entire process of bidding and screening to be completed and Sorin won the bid in 2011.
But there was a problem. In the two years since it applied for the tender, Sorin had moved on to making more advanced machines. Production of the older, less sophisticated, machine that the BMC had ordered had been suspended.
Sorin was willing to give the latest machine without charging a penny more. But the stubborn mandarins of BMC would have none of it. They wanted the machine they had specified in 2009, even if it was an outdated piece of equipment. The tender was cancelled.
A new tender was floated towards the fag end of 2011. Only Sorin bid this time. The municipal corporation waited six months for another bid. When none came about, the tender was cancelled again. Reason? According to BMC’s rules, a tender float is considered invalid if it does not attract at least three bids.
In 2012, another tender was floated. It was scrapped again because only Sorin bid. Yet another tender was issued in the same year. Again, only Sorin bid. Scrapped.
Now, after four years of delays and several children falling to their defective hearts and KEM’s long queue, the corporation has wizened up. A new tender will be issued in March this year and the ‘minimum three bidders’ clause will be dropped. If all goes well, the new machine should be in June-July. But by then, the waiting list for open-heart surgeries would be longer by 500 more names.
Eight-month-old Ayush Verma’s uncle Rajaram Verma brought him to KEM from their hometown Jaunpur in Uttar Pradesh on local doctors’ recommendation. Ayush, Rajaram’s sister’s first born, suffered from pulmonary hypertension, a condition which led to excessive flow of blood into Ayush’s lungs, causing him to frequently come down with coughs and colds. Pneumonia was a constant threat.
Rajaram, his sister and Ayush moved in with their relatives in Dombivili and in August last year the family deposited the money to put the boy’s name in the waiting list. Rajaram travelled every week to Parel to check when Ayush’s surgery could be slotted. On his visits, he would see the hospital’s Paediatric Cardiac Surgery Department overflowing with little children. “After four months of waiting, I grew restless and started checking at other hospitals. I found out that no other government hospital carries out open-heart surgeries on children. Private hospitals told me it would cost upwards of Rs 3 lakh,” said Rajaram.
And then the moment of epiphany arrived on February 12 this year. “I think she had sensed things were slipping out of our hands. Perhaps, we had waited too long. My sister told me that day that she feared she was going to lose her child.”
Rajaram realised it was futile to wait for KEM to give them a date. He decided to sell his land back in Jaunpur and have Ayush’s heart fixed in a private hospital.
But it was too late. Ayush died two days later. “He was struggling to breathe. We rushed him to KEM. They put him on a ventilator. But it was all over in less than three hours – Ayush died even as I and his mother watched helplessly.”
Dr Suhasini Nagda, medical director for all civic-run hospitals, admitted that the situation at KEM is critical. “Yes, there are 700 kids and adults on the waiting list. But the process of buying a new heart-lung machine has been expedited,” she said.
Though she had no answer why it should take a hospital four years to acquire a machine that could save lives of children who are dying just waiting to be treated, Dr Nagda said steps are now being taken to create paediatric surgery departments at other civic hospitals too. “The new tender is for four machines. KEM will get two of them and Sion and Nair hospitals will get one each. We are looking to hire doctors at Sion and Nair for paediatric heart surgeries to shrink the waiting list at KEM,” she said.
Assistant Municipal Commissioner Manisha Mhaiskar said the BMC is doing everything it can to make sure the new heart-lung machines are in within the next three months. “If suppliers don’t bid for this tender, we will acquire the machines directly from them.”
Dr Shivkumar Uttare, executive member of the Maharashtra Medical Council, however, is shocked that the municipal corporation has allowed the situation to reach this critical stage. “Over 700 kids and adults on the waiting list is just unacceptable. With the resources BMC has at its disposal, this should have been dealt with a long time back,” he said. For a department that has 700 families waiting for a call, the size of KEM’s Paediatric Cardiac Surgery unit is tiny. Just five beds, all occupied by women with frail children in their laps. Just imagine their anxiety – they have their children’s surgery slotted after a wait of a year or more. What if they are turned back again, what if the lone, ageing heart-lung machine malfunctions, what if there is a case that requires more urgent attention? Today, the doctors will, if the heartlung machine behaves, operate upon one child – five-year-old Salina Sarfaraz Khan. A resident of Chandrapur in Vidarbha region of Maharashtra, her parents brought her to KEM in early 2010 and her name was put on the list in September the same year. A tense wait of nearly two-and-half years will come to end for Salina parents today. But for Vidya Bhagwat of Akola, whose son, 14-month-old Anup, is 700th on the list, the wait just began last week. Doctors have taken down her number and told her they would call when it’s Anup’s turn.