Passion
Her abiding passion for her work is evident in this memory she shares: "On the sixth day after my mastectomy (breast tissue removal) surgery, I came down with all the tubes still dangling from my chest and operated upon a patient who had been awaiting surgery for months. How can I say no to someone waiting to hear for years?" "Besides birth defects, there are many who lose their hearing to illnesses, like oral infection, mumps or meningitis, post-surgery or old age. Unfortunately, a majority of them cannot afford good treatment. Many also refuse treatment because they do not want others to know of their disability," says Souza, sitting in her room at the De Sa's Hospital in Mumbai.

Souza comes from a family of physicians! Her great grandfather would ride on horseback, taking his medicines to women in far-flung Goan villages. A painting of him on horseback still hangs in Souza's home. Her grandfather, a gynaecologist, shifted to Mumbai and set up the De Sa's Hospital at the footsteps of Malabar Hills. But it was through her father, Dr Joe De Sa, a famous ENT surgeon, that Souza found her calling.

"As a young child, I would watch my father perform ear operations, which I found fascinating. Although I am an ENT surgeon, I am most interested in ailments of the ears. The sweetest experience, I believe, is that of sound," says Souza. She says that, in the late 1980s, the cochlear implant procedure was still being perfected in the US, and there were no women ENT surgeons in the US. Souza had gone there to learn the technique and "unwittingly, I became the first woman cochlear implant surgeon". The implant is a device consisting of a receiver and electrodes, which is placed inside the ear through surgery. There is also an external processor, which can be worn on the body or behind the ear. The surgery helps restore hearing ability to almost that of a non-impaired person's. The cochlea is a spiral tube in the inner ear resembling a snail shell with nerve endings essential for hearing, and what the surgery does, in essence, is support the damaged inner ear.

Souza says that in India, so far, only about 700 such surgeries have been conducted, of which she alone has performed 200 in Mumbai and other parts of the country. "The procedure costs nearly Rs. 700,000. The cost of the implant alone is about Rs. 650,000, with hospitalisation accounting for the remaining cost," explains Souza. Currently, she has 2,000 patients awaiting cochlear implant surgery - a procedure they can hardly afford.

There is, however, little awareness about the surgery, and the expenses put the treatment out of the reach of most people. Souza has been actively working to generate awareness, and lobbying for the need to make the process more affordable. All she can do right now is offer a discount on the drugs, hospitalisation and operation charges.

Says Souza, "Since the implant is an expensive option, it needs continuous support from the government and corporate houses. Today, I am happy to say that the Government of Maharashtra, the Central government and other state governments, as well as many corporate houses, have taken an active interest in organising seminars and conferences on the issue for doctors and scientists."

Meanwhile, President APJ Abdul Kalam has urged Indian scientists to work towards manufacturing cochlear implants indigenously. "If the device is manufactured in India, we can bring the cost down, and more people will then benefit from it. I am happy to inform you that a prototype cochlear implant is being developed by Dr. S K Apparao in Vishakhapatnam. This should be ready by 2007, and will cost approximately Rs. 100,000 to 200,000 in addition to hospital and surgery costs. The device will have lower sound quality than the devices currently available, but will be affordable to many more people," says Souza.

Married to Francis Souza, an engineer, Souza recalls her many years of hard work. She would commute some 40 kms everyday to reach Mumbai's Seth AJB Municipal Hospital, where she worked from 1979 to 2000. After her shift at this hospital, she would travel another 10 kms to her father's hospital before setting off for her home in Thane on the outskirts of Mumbai. "I would meet my husband who would be holding our baby and trying to feed him," she recalls.

This mother of three faced her biggest challenge when she lost one of her twin daughters in a car accident. That was in 1995, when Souza herself was detected with breast cancer. In those days, every patient slotted to undergo mastectomy was administered Tamixiphen, a drug that curbs the spread of cancerous cells, which later affects the knee joint. In September 2005, therefore, Souza had to undergo a knee joint replacement surgery and must undergo another one for the other knee soon. Hardships, though, did not dim Souza's commitment to her work. "Within 15 days of the knee surgery, I had to fly to Guwahati for a surgery. I travelled in a wheelchair, but it was worth the pains to be able to help a patient get his hearing back. I love that," she says.

Rehabilitation
Following cochlear implant surgery, the patient has to undergo rehabilitation, including 'listening therapy'. The speech rehabilitation programme at De Sa's Hospital was originally set up by Souza's mother, Nancy De Sa. Now, with patients coming in from all parts of the country, the rehabilitation is undertaken in eight languages - English, Marathi, Gujarati, Hindi, Assamese, Bengali, Telugu and Tamil. The De Sa's Hospital has also set up several rehabilitation centres outside Mumbai. "Rehabilitation takes about six to nine months, and for those coming from outside Mumbai, it becomes a difficult and expensive affair," says Souza.

The winner of many awards - Millennium Achiever Award, International Scientist of the Year 2003, among them - and holder of a record in the Limca Book of Records (first surgeon in India to perform cochlear implant surgery), she says simply: "I want to usher in every hearing impaired child into the world of sounds."

By Surekha Kadapa-Bose
http://www.gorkhapatra.org.np/pageloader.php?file=2006/02/16/editorial/editorial2