"As the doctor read our baby's heart report, we saw his face and knew something was terribly wrong," recall Deepa and Bhasker Dinkar. The doctor was Dr Cherian at Madras Medical Mission (MMM), and what he held in his hand was a diagnosis of the couple's four-month-old son, Vismay. The boy had congenital heart disease (CHD).
It started with a routine check-up at the paediatrician, where an ultrasound revealed one big ventricle instead of the usual two. A normal heart uses its right ventricle to pump impure blood to the lungs (where it gets purified and goes to the aorta) and the left ventricle to pump pure blood to the entire body. In Vismay's case, the pure and impure blood were getting mixed. This, then, was CHD, rare and terminal.
Going to the US for treatment was too expensive, making MMM the next best option. Which is when a friend of the couple remembered: there was the Internet.
He recalled a similar case in China, where the father of a baby with CHD appealed for help online, in response to which two American women raised funds for surgery in the US. For Deepa and Bhasker, this was the first ray of hope.
Bhaskar began research online the next day, drafting appeals to institutions worldwide. Everyone replied instantly. Some didn't have funds, others asked for Vismay's medical reports but said they couldn't help because the case was too complicated. Healing the children said they would take the child (but no parent) to the US, get him operated and bring him back - but that was difficult for both parents to accept.
Then, one day, Gloria's Place of Hope, dedicated to children with CHD (it bears the complete cost of surgery) replied: "Your child's case has been accepted." There was a long list of children though, and Vismay would have to wait. Also, of the three-part surgery, the first would have to be done in India immediately.
Vismay was operated at MMM, but complications arose. After the operation, he couldn't breathe without the ventilator and doctors were baffled. The Dinkars prayed, then sent out more email. Bhaskar managed to get in touch with Dr Roger Mee, one of the best paediatric surgeons in the world, who began studying the case closely and exploring possibilities over email. "Surgeons at MMM couldn't believe Dr Mee was actually writing so much when he didn't even know us," says Deepa.
Finally, doctors tried putting the baby in nitric oxide instead of oxygen for three days. It cost the Dinkars Rs 7,000 per hour, but it worked.
While the couple waited for a call from Gloria's, Deepa began learning about the Internet, and joined a CHD support group online. "I can't express the strength I got. Just discussing your problem with someone going through the same thing feels good. And talking to people whose children have recovered is immensely encouraging." Among the friends she made at the group was an American called Bridget Kelly, whose son was recovering from CHD.
Finally, on August 2, 2000, it was Vismay's turn. He had to reach the New York University Medical Centre and all arrangements had been made. "It was the happiest day of our life," say the Dinkars. The second part of the operation would have cost them $ 35,000, an amount they could never have afforded.
The only problem was that the institute allowed only one visa, and Deepa needed Bhaskar to help her deal with the situation. She mentioned it online, and Bridget came to her aid. A few phone calls later (thanks to a friend who was a Congresswoman in America), Bhaskar and their 7-year-old daughter Vaishnavi were on their way with Deepa. The second operation was a success.
The third stage of the operation will be completed later, with Gloria's bearing all medical costs. Today, back to a happy life with their two children in Mumbai, all the Dinkars want to do is help others in a similar situation. Since people in India don't have easy access to the Net, Deepa also plans to form an offline support group. "Gloria Weichand, Dr Roger Mee, Bridget Kelly - I will never forget them. If it wasn't for the Internet, this could never have happened," says Deepa.
At the other end, Bridget writes, "I think I was meant to be on the Web Ring, not only to help me get through my son's CHD, but to help Deepa and her family. And it was my pleasure."
Tomorrow: read all about Support Groups