In December 2017, Amravati-based doctor couple Umesh and Ashwini Sawarkar lost their three-month-old daughter Meera. They were returning from a function when a speeding car rammed into their vehicle, severely injuring Meera and Ashwini in the backseat.
Umesh was asked to rush Ashwini to a nearby hospital, as good samaritans volunteered to take baby Meera to a pediatric hospital. A CT scan the same night revealed that Meera had suffered a brain haemorrhage.
Although within eight hours she was shifted to Nagpur’s Central India’s Children Hospital and Research Institute (CICHRI), her MRI scan revealed extensive brain injury. Umesh knew there was no hope; their baby was brain dead.
Even if she survived by some miracle, she would have a very poor quality of life.
And so with a heavy heart, he approached Ashwini, who had already suffered a pelvic fracture and now had to cope with the uncertainty of losing her only child. Even before Umesh could say anything, she whispered the words ‘organ donation’ into his ear, mirroring the thoughts in his head.
The couple was told by authorities that rules on infant organ donation were ambiguous and they did not have experts who could grant someone as young as Meera the certification to confirm that she was brain dead.
Fighting all odds and several delays with the hospital, NOTTO and the Health Ministry, they managed to get all the approvals required, which took four days.
A ‘green corridor’ was set and Meera’s organs had found two pediatric matches on the list. Just four hours before the ambulance to pick Meera’s organs could arrive, at 4:00 a.m, the three-month-old suffered a cardiac arrest and passed away.
“That organ donation was my last hope to keep my daughter alive through somebody else. My heart sunk. I couldn’t let my last dream of seeing my daughter live on through the lives she saved happen. My baby was already brain dead, but we had to make her survive on a ventilator for four days to donate her organs. And yet it didn’t happen. My request to the authorities is to make the procedure simpler.
As a gynaecologist, I see newborns who suffer brain death within 15 days of admission due to birth complications. But they lose out on their chance to help other babies survive through organ donation because the rules are not clear. We are losing more and more organ donors every day,” Umesh told The Better India in an interview following the days after Meera’s death in December 2017.
The couple wrote a letter to the Prime Minister shedding light on the grey areas in the field of infant organ donation and asked for clarity on policies. (You can read the letter here.)
Before you start wondering why this story is gaining limelight again, let us tell you—if Meera were alive she would have celebrated her first birthday on August 21.
And though the pain of not being able to donate their daughter’s organs continues to twist a knife in the hearts of the young couple, they decided to make the day special by funding the open heart surgery of an unprivileged four-year-old child.
The idea struck them in July when they decided to contact social workers and their friends in the medical community, to help narrow down two children who were not covered by any government scheme so that they could help fund their surgery.
They spent three months searching for such children and were finally connected to four-and-a-half-year-old Payal Parate and five-year-old Aswashil Dhawale.
While Payal is the daughter of a daily wage earner, Aswashil is the son of a farmer. Both come from underprivileged tribal villages of Wagholi and Deonar.
On the day the surgery was scheduled, Aswashil received a last-minute confirmation from the state, and was operated under the government scheme. So the doctors decided to reserve his funding to help another kid in the near future.
Payal, though, was not covered by any government scheme.
The oldest among three daughters of a daily wage earner, Payal would often fall ill and was constantly admitted for fever and infections.
She hadn’t gained weight in a year and couldn’t go out and play with other kids her age. After an Anganwadi worker felt that the issue went beyond just poor immunity, she advised Payal’s parents to take her to a private clinic. There, a 2D Echo test detected a hole in her heart.
The couple made arrangements to transport Payal and her family, to help them get her to the Amravati-based Shri Sant Acchyut Maharaj Heart Hospital (SSAMHH), on the day of the surgery.
A pediatric cardiac surgeon and anesthesiologist travelled from Aurangabad to carry out the surgery. The total cost of the operation at the charity hospital was Rs 80,000, and Umesh reveals that average hospital charges over Rs 1.25 lakh for the open heart procedure.
“Payal had waited for a year since being diagnosed with the condition, and could not stop smiling after the surgery. She can finally live a normal life and do everything other kids her age do, without the worry of falling ill. Even her father was deeply moved and thanked us for helping treat his daughter in time,” says an overwhelmed Umesh.
“Nobody can fill Meera’s void in our lives, but the smile on the faces of the children who endlessly wait for a stronger heart, help us deal with the pain of losing our daughter. I want to tell people that they shouldn’t wait for a tragedy to strike to help. Sign up for organ donation and help give life to people in dire need of it,” he signs off.
Umesh and Ashwini, we are sure that wherever Meera is, she would be proud of you.
If you want to join Umesh in his mission to increase awareness about infant organ donation write to him at firstname.lastname@example.org
(Edited by Gayatri Mishra)