The Shaikhs from Collector Chawl, Khindipada in Mulund, are a happy lot even in tough times. The family of four stay in two separate rooms in the chawl, a forced necessity after 13-year-old Suhana underwent a heart transplant. They are still struggling to gather funds to pay for the surgery that took place in August and for post-operative treatment.
“We have a 10×15 room in the chawl, where the four of us used to stay before our daughter had her surgery,” said Ajadalli Adam Shaikh. He has gone beyond his means to rent a 12×15 room in the same chawl for Suhana. “Doctors have asked Suhana to stay in a clean, confined and air conditioned environment. She cannot catch infections. Only she and I stay over here,” said her mother, Sultana with a smile as she hands this reporter a glass of water.
Ajadalli, who works as a driver for BEST, has been able to resume his duty only recently. “I have been caught up with my daughter’s treatment and surgery. This has been a tough time for us. I’ve not been able to go back to work for a long time as I’ve been from pillar to post in search of funds,” said Ajadalli.
Suhana underwent the surgery on August 20 after being diagnosed with the end-stage heart disease in April 2017. Since then, the cheerful and active girl has been homebound. She was donated a heart by a 47-year-old woman, who was declared brain dead in Fortis Hospital, Mulund, due to intra cerebral bleed.
“I earn Rs 18,000 a month, of which Rs 5,000 goes as rent for Suhana’s room. It is way too difficult for someone of my capacity to pay such a lot of funds. The surgery cost us Rs 20 lakhs which hasn’t been paid fully yet. I have asked for funds everywhere and have paid Rs 16 lakhs. I am yet to pay Rs 4 lakhs and I don’t know how I will be able to do that,” he added.
Though Sultana tries to support Ajadalli by taking up tailoring work, the earnings are not enough. The family has not been able to afford school books for Suhana’s younger brother Amaan. He has made a habit of memorising his lessons instead of writing them down in a bid to save cost of wiring books. “Tailoring is a seasonal job and doesn’t pay much. I get orders during Eid or Ramzan or Diwali but that too is very meagre,” said Sultana.
The hospital too has been doing all it could to make every transplant affordable. “The aim has always been about making every treatment affordable. We give discounts to every transplant by associating with various trusts. Focus is always about saving lives, and not just on money,” said S Narayani, Zonal Director, Fortis Hospital, Mulund.
One of the biggest challenges that transplant patients face is affording immunosuppressant medicines, which have to be taken throughout the person’s lifetime. These drugs reduce the body’s reaction to foreign organs and lessen chances of the transplanted organ being rejected.
“Suhana will have to take immunosuppressants for life, which will cost us Rs15,000 a month. The first six months, however will cost us Rs 30,000 a month. The hospital also requires us to do an Endomyocardial Biopsy (EMB) this month which will cost us an additional Rs1 lakh. Where do I get this amount of money from?” said Ajadalli as he gets ready to leave for work.
Cost has been a prime factor in terms of organ transplant. For one, experts say that most people don’t come for follow-ups if they can’t afford treatments. “A paediatric heart transplant costs more or less the same as that of adult transplant, Rs 20 Lakhs. But the real cash crunch is seen in biopsy that is done after the transplant. As doctors, we try as much as we can to make sure that the families shouldn’t reject the option only because it is expensive,” senior paediatric cardiologist, Dr Swati Garekar.
- Out of the twenty-nine heart transplants that have taken place in the city, only three have been among children. (Source: ZTCC)
- The challenges involved in paediatric heart transplants include getting a suitable heart.
- We have done around 12 paediatric transplants since we began our program in 2015. The challenges involved in paediatric heart transplants include getting a suitable heart
- In the entire world, only 12% of heart transplants that take place are among children.
- In the entire world, only 12% of heart transplants that take place are among children. This is so because paediatric heart transplants are peculiar and challenging in nature