Giving one more life

Abhi Pandey is five years old and a bundle of energy and mischief. As I talk to his mother Soni Pandey, he keeps trying to grab my audio recorder. Till recently, the child could not hear. His mother explains that he was not born deaf; till he was 18 months old, he could hear but then he got a viral fever “aur uska kaan kharab ho gaya (lost his hearing). The doctor asked us to put a machine (hearing aid), which we did, but it did not help.”

Little Sandesh is all ears, sitting on his father’s lap, post the cochlear implant.
Little Sandesh is all ears, sitting on his father’s lap, post the cochlear implant.

Next began a hectic round of doctors, including at the teaching hospital in Lucknow “but they said he will never hear or speak; even an operation will not help. So I brought him to Delhi without informing my sasural (in laws) or else they wouldn’t have allowed me to come,” says Soni. She next tried AIIMS; “I kept going there but never managed to get an estimate of the money required to make Abhi hear or speak again,” says Soni.

I am 62, my whole life I begged people to help me, but now these Rotarians tell me that we’ll support you with funds till you get tired of operating.
– Dr J M Hans

Finally, after spending nearly Rs 2 lakh, she gave up and somehow landed up at the Rotary Institute for Special Children (RISC), run by the Rotary Club of Delhi Riverside, D 3012. This is a vocational centre which takes care of about 62 poor children with speech, hearing and other handicaps.

As providence would have it, a Past President of the Club, Satish Gupta was a patient of ENT surgeon Dr J M Hans, formerly Professor and Head of ENT at the Ram Manohar Lohia (RML) Hospital in Delhi. Now he is the Chairman of the Venkateswara Hospital in Dwarka.

From right: Dr J M Hans and RC Delhi Riverside President G P Agarwal with children fitted with cochlear implants.
From right: Dr J M Hans and RC Delhi Riverside President G P Agarwal with children fitted with cochlear implants.

A veteran of cochlear implants — he has done a whopping number of 1,800 cases, 300 of them at RML — he discussed with Gupta his passion on how stone deaf and dumb children below 8 years could be helped to hear and speak through cochlear implant surgery. But while the rich can afford the cost — these implants have to be imported from the US, France, Austria, etc, and cost between Rs 5.8 to Rs 13.5 lakh — they are prohibitive for the poor.

When people call them ‘mad’, the parents start locking up these children and don’t want to send them to school.
– Kavita Tripathi

The diagnostics, surgery and hospitalisation cost of a cochlear implant procedure is Rs 8 lakh. “But Dr Hans told us that he could get Rs 3 lakh from the Prime Minister’s Relief Fund, so if Rs 5 lakh could be raised, we can restore the hearing and speech of one child,” says Gupta.

The Modi generosity

Dr Hans, who was former Prime Minister Manmohan Singh’s personal ENT surgeon for 10 years, requested his help for such children. “But he granted only Rs 50,000.” But now that he is in the PM’s Relief Committee for ENT, recently he met Prime Minister Narendra Modi and “told him that Rs 50,000 is nothing for such a costly procedure. Without any hesitation, he increased the sum to Rs 3 lakh for every child.”

Returning to PP Satish Gupta, when he related the story about the plight of these handicapped children to his club members, in no time Rs 20 lakh was raised and four children, including Abhi from the RISC, underwent the surgery and were fitted with a cochlear implant by Dr Hans. The doctor told the Rotarians that for a couple of weeks the children should be kept under their care as return to their slum homes might result in infections. So “we rented an AC apartment for these children and their mothers,” says Gupta.

30 million children in India require a cochlear implant, and 25,000 children are added each year.
– Dr J M Hans

Dr Hans was a Rotarian earlier but had left Rotary, but now encouraged with the support he is getting from these Rotarians, has rejoined as a member of RC Delhi Riverside.

Causes of deafness

He explains that cochlear implants can help totally deaf children hear; some of these children are born deaf or pre- lingual — they haven’t ever spoken or heard — which means they have to be taught speech. The causes of a hearing handicap can be consanguineous marriage, which is rampant in our country, meningitis, measles, rubella, mumps, or the side effects of some drugs, head injury or noise pollution. If both parents have defective genes, then one child in four will be deaf.

Young Nitin in conversation with his parents after his hearing has been restored, thanks to the cochlear implant.
Young Nitin in conversation with his parents after his hearing has been restored, thanks to the cochlear implant.

Dr Hans says the advantage of spending money on the implant is that if it fails, the company will give a replacement free as also the cost of surgery; “that’s a guarantee”.

It was first made in Australia by an ENT surgeon for his father. Now it is being made also in Austria, the US and France; “even Japan and China don’t make it”.

As for India, he says he was in the team under former President APJ Abdul Kalam when the latter was in DRDO, and they had made a device and conducted animal trials on cats. “And now it is ready for human trials.”

Soni Pandey is such a brave woman. All alone, she has borne the brunt of getting her child treated. Her husband hasn’t even come from the village once to Delhi to find out how they are faring.
– Kavita Tripathi

Dr Hans recommends this procedure only for children below 12, “because above 12, they will be able to hear but won’t speak. But personally I feel that even hearing is a big asset.”

So what next? Dr Hans is overwhelmed by Rotary’s response; “I am 62, my whole life I begged people to help me, but now these Rotarians tell me that we’ll support you with funds till you get tired of operating.” Adds Gupta confidently, “In Rotary, there is never a dearth of money, when you want to do something good.”

But the problem across India is huge. Dr Hans says that at present there are 30 million children in India who require a cochlear implant, and to this number are added an additional 25,000 children each year. “Everyone can be helped but the age is crucial. We’ve put a cochlear implant on an 8-month-old child and you can’t even make out the child was ever hearing handicapped!”

Heart-rending

Charu Hans, his wife, a microbiologist, has given up her vocation and is now devoted to working with such children. She recalls that in one place when she visited a deaf and dumb school, the “teacher told me that in the villages children who can’t hear and speak are called pagal. Just imagine doing this to a child who is not mentally deficient in anyway. And when people say that, the parents themselves start believing it.”

Kavita Tripathi, the Principal of RISC, explains how these children always have an additional skill or the sixth sense. “But when people call them ‘mad’, the parents start locking up these children and don’t want to send them to school. We don’t charge any fees at our institute, and yet have to plead with parents to send the children to school. The day we start charging a fee, they will stop these children from coming to school.”

If this is happening in Delhi, the plight of hearing handicapped children in rural India can be imagined. Kavita adds that a few days earlier she had seen a couple working at a construction site in Delhi; they kept two of their children, but sent away the third one, who can’t hear, back to the village. “I’m sure he’ll be locked up inside the house there. And we’ve just celebrated the 70th anniversary of our Independence.”

This implant works best for children below 5; between 5 and 10, his speech will not be that good; 10–15 he will be able to hear and understand, but not speak.
– Dr J M Hans

Pointing out to the parents who have come to meet me and whose children have been recently operated thanks to Rotary, she says earlier these parents were told by doctors that surgery could be done but with no guarantees. “So when we told them this procedure will make their children hear and speak, they refused to believe me. I too was initially scared to get their hopes up.”

The doctor explains that this implant works best for children below 5 as “he will be totally normal. Between 5 and 10, his speech will not be that good; between 10–15 he will be able to hear and understand, but not speak. You have to be honest with parents; for the younger children I tell them beg, borrow, steal; I’ll also help but get it done.”

Interestingly, recently an 18-year-old man was brought to him; “I asked the parents do you have money to throw away. They said: ‘tons of it’, so I said get it done, he’ll be able to hear something.” The father, a rich farmer from Bhatinda, said his son could drive a tractor but not even hear the horn. He is now very happy — he went for the costliest implant at Rs 13.5 lakh — and has referred many other patients to me after that.”

Many ENT specialists prescribe hearing aids; they don’t recommend cochlear implants because they know that once that is fitted and the child can hear, their source of income is gone… it’s easy money.
– Dr J M Hans

Another patient from Bahrain got the implants fixed in both the ears of the child, which is the perfect solution but an expensive one.

Misinforming parents

The saddest part is that parents of hearing handicapped children are given the merry-go-round by ENT specialists, often for dubious reasons. Sakshi is the daughter of Arun Bhardwaj, who works in a private company in Noida, on a salary of Rs 6,500. Jaidevi, her mother, says that they didn’t realise that their daughter, who was born in July, couldn’t hear “till Deepavali day, when she didn’t react to the sound of crackers.” Doctors in Aligarh where they lived “gave us all kinds of medicines and drops to be put in the eyes, ears, nose, mouth… bacchi bhi pareshan, hum bhi pareshan.” After six months they said she can’t be cured. One doctor said surgery was an option but there was no guarantee she could hear after that.

Easy money

Dr Hans says many ENT specialists prescribe hearing aids, even though they know these will not help, and keep changing the hearing aids regularly. “They don’t recommend cochlear implants because they know that once that is fitted and the child can hear, their source of income is gone… it’s easy money.”

Mohanlal Kuswah and his wife are vegetable sellers and are very happy that with Rotary help their 9-year-old son Sandesh has got an implant. Earlier a doctor had asked them to raise Rs 7 lakh for such an operation, but “where would we go for money like that? We don’t even have any land to sell.”

Children found the hearing aid  very uncomfortable. But the moment they got the cochlear implants, they’ve started feeling so good that every morning when they get up, they bring the device to their mothers!”

Kavita, the Principal, points out that both Nitin and Sandesh would come with hearing aids and had to wear them compulsorily in school “but they would quietly switch off the hearing aid, because it made an irritating noise and was very uncomfortable. But the moment they got the cochlear implants, they’ve started feeling so good that every morning when they get up, they bring the device to their mothers!”

She is all praise for Soni Pandey, Abhi’s mother. “She is such a brave woman. All alone, she has borne the brunt of getting her child treated. Her husband, who works as a teacher in a school, hasn’t even come once from the village to Delhi to find out how they are faring.”

President APJ Abdul Kalam called me to the Rashtrapati Bhavan and grilled me to make sure I was not fooling the people!
– Dr J M Hans

But Soni stoutly defends her husband, “No, no, that’s not true, he is very busy and his mother is paralysed. So he has to take care of her.” A postgraduate from Lucknow she now runs a coaching centre in Delhi to teach spoken English.

Children at the hospital after the cochlear implant surgery sponsored by RC Delhi Riverside.
Children at the hospital after the cochlear implant surgery sponsored by RC Delhi Riverside.

Sohanlal owns a small cloth shop in Delhi and only when Nitin was one, did they discover he couldn’t hear. He and his wife Gita took him to several hospitals in Delhi and Jalandhar, but “it was of little use.”

The children who have been given implants can hear but will have to be trained to speak. Some of them have already picked up words like Mummy, Papa, bua, aao, pani, etc.

Pictures by Rasheeda Bhagat

Cascading effect in Rotary

Sharat Jain, DG of District 3012, was sharing a car ride with Satish Gupta, Past President of RC Delhi Riverside, who related the story of his club helping put cochlear implants on four children. He asked to meet the children who were still under the Rotarians’ care. It was just 15 days after the surgery; meeting the kids and their parents, “was a real experience. Every DG’s dream is to do something different and really good,” says Jain. Only a few weeks earlier, an event was organised for Gift of Life, under which cardiac bypass surgery is done for children. “A few Zambian children had undergone heart surgery and at that programme the Zambian High Commissioner said these children will return home, and you will forget them but they will never forget you. The mothers said they had no life till you gave them one.”

From left: Past President of RC Delhi Riverside Satish Gupta, President G P Agarwal, Principal of RISC Kavitha Tripathi, Ruchika Jain, DG Sharat Jain and Dr Hans with the children.
From left: Past President of RC Delhi Riverside Satish Gupta, President G P Agarwal, Principal of RISC Kavitha Tripathi, Ruchika Jain, DG Sharat Jain and Dr Hans with the children.

On the spur of the moment Jain told Gupta this would become a much bigger project and “we’ll name it One More Life. Then I started talking about it in club installations and everywhere I mentioned it, there was tremendous support and enthusiasm.”

By the time Dr Hans was installed, there was already commitment of Rs 10 lakh for two more operations and Tripathi, Kavita’s husband, who is in the construction industry, said he would match it by another Rs 10 lakh! “On the podium was PDG J K Gaur, who got up and said I will give Rs 5 lakh and that made me sure this project will tick.”

Every DG’s dream is to do something different and really good; everywhere I mentioned the One More Life project, there was tremendous support and enthusiasm.
-DG Sharat Jain

Jain says that everywhere “we keep talking about the multiplying effect of our Foundation. Our District is rather rich and I thought for four children we’ve put 20 lakh from just one club, but had we routed it through the Foundation, maybe we could have got Rs 80 lakh and we could have helped 16 children. Anyhow, what is done has been done and now we will take it as a district project. But this club can continue to lead it because they initiated it.”

Now he plans to file for a global grant and take this project to Rs 50–80 lakh; “we’ll do whatever we can… by now I have got 4 or 5 clubs to commit another Rs 20–30 lakh.” At a recent seminar in Delhi where RID Manoj Desai presided, the children who had been operated were present as also their parents, and “one parent said we hadn’t seen god, but we saw god in Dr Hans. And two more people came forward to support this project. So this is a cascade. With the power of TRF behind this project, I’ve committed to Dr Hans to raise a minimum Rs 1 crore for this project this year.”


A scientist and a doctor/artist

When Dr J M Hans started fitting cochlear implants through a minimal invasive technique, that needed only a 1.4 mm tunnel to reach inside, instead of a big cavity in the skull that was being done earlier, often causing complications, this was reported prominently in the media.

“This little tunnel takes 10 seconds and then we screw the impact inside… so now total time taken is about 40 minutes instead of the 4 to 6 hours taken earlier.”

His wife Charu Hans intervenes quietly to say: “He makes it sound so simple, but it really isn’t so!”

After the media reported it, he got a call from Dr APJ Abdul Kalam, who by now was President of India. He was asked to bring all the equipment to be inspected by Kalam; “he wanted to be convinced that I was not fooling the people,” smiles Dr Hans. The President had given him 15 minutes “but he grilled me for 90 minutes. And yet he was not satisfied! He sent two men from the DRDO to my hospital to watch the surgery. They watched me do the procedure, went back and told him ‘he is not a surgeon, he is an artist!’ ”

That wasn’t all; “Government doctors rarely get national awards. But one day the police, Income Tax people, etc, visited my house, making inquiries.” He soon learnt that Kalam had recommended him for Padmashri from the President’s quota of two “jo cut nahi sakta,” he chuckles. And he got the Padmashri in 2005.


How the implant works

Dr Hans explains that the cochlear is a transducer which converts sound waves into electrical waves. “Till the sound waves are converted into electrical waves, the nerves will not take them to the brain. The implant does this and so the function of the cochlear is bypassed.”

One comment on “Giving one more life

  • Oct 28 2016 at 1:27 pm
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    Commendable, excellent, wonderful services by these Rotarians……A great gift to the children. I salute you all.

      Reply

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