Dr Desai wrote at the request of the District Governors of India Rotary District 3050 & 3060

Deafness is one of the commonest congenital disabilities in the world. It is estimated to be 30 times more common than other congenital defects, such as sickle cell anemia, cystic fibrosis, hypothyroidism, etc.

As reported by WHO, there are about 250-300 million deaf people in this world, 2/3 of them live in the underdeveloped nations, of these India has the largest share.

From a recent report in the India’s leading daily newspaper, The Times of India, Jan 23, 2007;

” That one out of twelve (1/12) persons in India has hearing loss. The problem is receiving political attention. The health ministry has launched its project to focus on The Prevention and Early diagnosis of deafness and not the least, treatment of ear infections and other diseases causing hearing loss ………”

This campaign was introduced at the end of Jan 2007 in 25 districts and 12 states of India.

If the above is implemented by the Health Dept., i.e. MMR vaccination and early detection of Newborn Hearing loss and intervention (EHDI), India will have a great reduction in Deafness, Blindness and other congenital defects within 10 years.

EHDI will also result in the marked improvement of the EDUCATION of the child with hearing loss, along with the treatment of the Deaf, providing them with hearing aids and other treatments as indicated.

As the subject of Deafness and prevention is so large, including the care of the ear and ear infections, Project Deaf India plans to focus on:

1) MMR vaccination to reduce Deafness and Rubella vaccination to prevent CRS syndrome (congenital Rubella syndrome) in their offspring.

2) EHDI= early detection of newborn Hearing loss and Intervention. During the past few years, accurate computerized equipment for newborn screening is available.

MMR Vaccination for India:

The introduction of MMR vaccination in developing nations results in definite benefits—A great reduction in deafness, blindness and other congenital defects.  MMR vaccination is given in two doses, the first at 12 months and the second dose at 4-5yrs of age, before entering school.
Early Newborn Screening of Hearing Loss and Intervention (EHDI):

Historically, EHDI was implemented in the USA, by Dr. Marion Downs, as early as 1964. Dr. Karl White and others made it a universal project since 1994 and pushed for mandatory legislation throughout the USA.

Why is the Early detection of Hearing Loss so Important?
Initially, babies who are born with hearing loss do not look or behave any differently from babies who are hearing.  However, undetected and untreated hearing loss has serious consequences on the acquisition of language skills as well as cognition and emotional and social development. Deafness separates people from people. The first 6 months of a baby’s life are very crucial for the development of speech and language.   Evidence shows that to be most beneficial, screenings should be done before discharge from hospital with diagnostic evaluation completed by 3 months of age. Intervention should be started by 6 months of age.

According to Kalyani, a Pune audiologist, these screenings can be synchronized with the national vaccination plan of India.  Infants identified with hearing loss can be fitted with amplification devices (hearing aids) as early as one month of age.  These children can then attend mainstream schools.

There is tremendous financial liability to society if the hearing impairments are untreated and undetected.

How can Newborn hearing be checked?
As a result of advances in technology, a newborns hearing can be checked shortly after birth. There are two main techniques for screening hearing in newborns: AABR (automated auditory brainstem response) or OAE (evoked oto-acoustic emission).  Both these methods are safe, simple and painless.  It takes only a few minutes to complete a screening.

In India, EHDI is being implemented in Mumbai, Chennai, Mysore, Trivandrum and now Goa. It should be started in all cities and villages in India.  It is the villages, where most of the population of India resides, EHDI is best coordinated under the national immunization plans for India.  In developed countries, every hospital has a screening machine for newborn hearing loss detection before the mother and baby are discharged from hospital.  The screening machine is a small handheld, battery-operated machine kept in the nursery.

For India, where the mother and child are kept in hospital for 5-7 days after delivery, we have introduced a screening method suited to the country.  Namely, and audiologist or Anganwadi health worker trained in the screening of newborns transports the screening unit from hospital to hospital for screening (the unit is the size of a laptop computer).  This way he can screen about 100 babies a day.  Those who fail the test are then referred to an ENT doctor for further confirmation of hearing loss and treatment; surgery, hearing aids, or cochlear implants.

India has a great shortage of audiologists and more so of pediatric audiologists, however an Anganwadi health worker can help fill this gap.

Suggestions for Improvement of Deafness in Gujarat:

The state of Gujarat has about 60 million people, with most of this population residing in villages, with agriculture as their livelihood.  They have fewer facilities of the modern lifestyle, medical/hospitals, schools, pure water & better hygiene and sanitation.  It is estimated that deafness is diagnosed at 4-6 years of age, resulting in the loss of the ability to learn language or communication skills.  The child is called DEAF AND DUMB.  No special deaf educational facilities are available in the villages. The deaf child lives an isolated life, does menial jobs or is given to an orphanage.  In the cities the deaf often beg on the streets.

If Gujarat’s female population is vaccinated with Rubella or MMR (measles, mumps and Rubella) vaccine then deafness and blindness can be drastically reduced, (50% reduction!).

In India, both vaccines are locally produced in Pune, and are available for Rs 30 for Rubella and Rs 50 for MMR per vaccine. Although,  it is most desirable that the National or State Governments take the responsibility for vaccination, an alternative is that we, as Rotarians undertake the task and achieve success, as we have done for Polio.

It is my desire that all Rotary Clubs of Districts 3050 & 3060 combine their efforts and apply for a 3H Grant from Rotary International.  I will also seek the cooperation of several clubs in my District in the USA (District 5320).

The realization of the above projects (vaccination and EHDI) in Gujarat will be an example for the rest of India for the reduction and intervention of deafness.
“EVERY CHILD MUST BE ENSURED THE BEST START IN LIFE—THEIR FUTURE, AND INDEED THE FUTURE OF THEIR COMMUNITES, NATIONS AND THE WHOLE WORLD DEPENDS ON IT”

UNICEF

The New Year brought new surprises to the Deaf and Hard of Hearing students at Taft Elementary School in Santa Ana.  Newport/ Balboa and the Santa Ana North Rotary Club jointly received a District Simplified grant from Rotary International. They donated $4,000 to the Deaf and Hard of Hearing Program (DHHP) to purchase much needed reading books.

Rotarian member, Dr. Rajendra Desai, along with other parents, helped establish the Deaf and Hard of Hearing Program 35 years ago.  Having a deaf daughter himself, he recognized the need for deaf children to read.  Exposure to books teaches Deaf children English, which is directly connected to writing.  Dr. Desai understands the importance for deaf children to read and write in English in order to communicate in a hearing world.

The Santa Ana and Newport-Balboa Rotary Clubs joined with Project Deaf India to donate books for deaf and hard of hearing students at Taft Elementary School.  The books use many pictures and larger text, which make it easier for deaf children to learn.  The books are valued at $4,000.

A key organizer in the donation was Rajendra Desai, whose daughter attended Taft three decades ago.

Eighty-five children are served by Taft’s Deaf and Hard of Hearing Program, the majority from Santa Ana.

Above, Taft Preschool student Nancy Guerrero and 5^th grader Clemente Tellez; below, Rotary club representatives Rajendra Desai and Larry LeDoux with Taft Principal Steve Longacre.

On January 1, 2004 Dr. Desai started his three-week tour to India for continuation of “Project Deaf India.”  His first stop was Singapore for three days.  He observed the project on, “Early Detection of Hearing and Intervention.”  This project is supported by the government of Singapore, it consists of testing every newborn baby at all hospitals and nursing homes to detect hearing loss.  Even though the babies are kept for only two days in most of the hospitals all of them receive testing first by the OAE method and if they are detected to have hearing loss then they are confirmed with AABR technique.  In turn this is fed to the database for the whole city. He was very impressed by the several coordinators of this project whom worked very hard and are devoted to the project.

Dr. Desai then went to Chennai, India where he was invited as a guest speaker to All India Pediatric Conference.  He presented his forty- minute presentation with power point, this was well received because of ten-minute interaction with the audience.  After spending four days in Chennai he proceeded to Bangalore.  He gave two lectures to local hospitals on the same subject and then went to the city of Mysore where he has been working on the Rotary International Grants for the past five years.  The reception by the Mysore Rotarians is always exceptional.  He gave two more lectures on the above subject at two medical schools.  He also prepared a final matching grant application on “Early Detection of Hearing and Intervention.”   This application is between Rotary Club Mysore and the Rotary Club of Newport-Balboa.  The application is being sent to Rotary International with the hope of successfully achieving a grant of approximately. $60,000.

Dr. Desai then proceeded to Mumbai where he met his relatives and also discussed the future of his various projects with the Rotarians.  He then visited Pune where there is the Serum Institute of Pune.  This institute supplies various kinds of vaccines to about 130 countries.  There he met the son of the CEO as well as several members of the staff to discuss the possibility of the new project on “Vaccination with Rubella” for all teenage girls to prevent the rubella syndrome, which is greatly responsible for many congenital diseases such as deafness, blindness, heart disease, etc.  In the city of Pune there are approximately 10,000 teenage girls and if all receive vaccination with rubella their offspring’s will be free of the above diseases particularly deafness.  Dr. Desai returned to California after a 3 weeks successful tour.

He presented his resent documentary on “Prevention of Deafness in India” at all his lectures.  He is looking forward for successful achieving the above goals of detection of early deafness and vaccination with rubella in the near future

Raj Desai and his daughter, Anjali (See Photo) who is profoundly deaf were invited guests at the Newborn Hearing Screening (NHS 2004) in Lake Como Italy. They participated actively during plenary session as well as put up a poster on “Project Deaf India (See Photo).  The poster’s theme was supported by the Rotary Club of Newport Balboa, Rotary Club of Mysore, and The All India Institute of Speech and Hearing , Mysore(AIISH). The poster summarized the personal history of Anjali who was determined hearing impaired before 6 months of age, as a result of the Rubella syndrome.  She was then given Intervention with family, social and psychological support. Anjali was also introduced to sign language and schooling.

In Mysore, a pioneer project of the early detection of the hearing impaired of every new born and intervention, has been started (EHDI) and the preliminary data was presented. In Mysore, infants are born at public and private hospitals, there are also a sizable amount of births by midwives at home.  From a Matching grant of Rotary International, a mobile van equipped with a sound proof room will go to remote villages and test newborns before one month of age.  The infants found with hearing disabilities will be referred to a central facility for intervention; i.e. surgery, hearing aids or cochlear implants.  All given free to the needy and by a sliding scale to those who can pay.

In February, 2004, both Raj Desai and Anjali were invited to a National EHDI conference in Washington D.C. where Anjali was the only speaker who was deaf.  She was provided with sign language interpreters at both meetings. The success of her speech in Washington resulted in the invitation to the NHS 2004, International meeting at Lake Como, Italy.

At the NHS 2004 conference in Italy, Dr Desai took active part in the International forum on Newborn Detection and made an important contribution. As the EHDI is only practiced in the developing countries, whereas 2/3 of the deaf children are born in the UNDERDEVELOPED nations, Dr Desai remarked that the developed countries should share their experience with funding for instruments for Newborn Diagnosis and also send expert Pediatric Audiologists to train their counterparts in the poor nations. This idea drew immediate attention of the people who represented international groups, such as WHO.

The second point made by Raj Desai also deserved attention.  Because of his extensive experience as a Cancer Doctor he started many “Cancer support groups”, that meet weekly in most of hospitals, and help newly diagnosed cancer patient and family.  He suggested that similar groups should be started weekly, at every EHDI – newborn screening University or hospital. Recognizing that any disability at birth is a burden to the child and family, a supportive group, consisting of an ENT doctor, Audiologist, Social worker, a psychologist and parents of a successful deaf child, volunteer to help a newly diagnosed deaf child and the parents to face the disability.  The immediate response was well appreciated at the conference

Dr Desai distributed about 80-90 CDROMs of his documentary “Silent Village” to members of various countries.  Thus we hope that the “Project Deaf India” has now created awareness in many countries of the world with fervent hope that the incidences of deafness will be decreased globally by Rubella vaccination, and the early detection of deafness will enable a hearing impaired child with early intervention and make him/her a useful self earning citizen of the world.

GOALS:
Project Deaf India (PDI) was started in 1998 by Dr. Raj Desai in conjunction with Rotary Clubs of Newport -Balboa and Mysore, India. The goal of Project Deaf India is to improve the lives of poor deaf children in India and prevent high incidences of deafness. An overview of the project can be viewed on the web at www.projectdeafindia.org.

HISTORY:
1998-PDI in collaboration with Gallaudet University and a matching grant from Rotary International, sent 2 teachers of the deaf to Mysore, India for a 3 month stay. They taught sign language to 350 students and parents and other interested public. In addition they taught basic computer skills to the children.

1999-Started an EHDI (early hearing detection & intervention program) in the city of Mysore and its outlying villages with a matching grant from Rotary International. A van with a soundproof cell and equipment to test for deafness in newborns was sent throughout the area, as 30% of births occur at home.  Testing was done in conjunction with the ALL INDIA INSTITUTE OF SPEECH AND HEARING. Approximately 50,000 newborns have been tested in this ongoing project.

2000-2001-Fellow Rotarians told of “villages of the deaf.” Took a team of researchers from NIH (USA) and All India Medical Institute, Delhi to these villages where we confirmed a high incidence of hearing impairment. The villagers were given hearing aids and a health clinic was established to treat causes of the deafness. There was only one well for 500 villagers it was contaminated, as it was used for bathing, washing clothes and drinking the same recycled water. Other causes of deafness included, lack of rubella-measles vaccination, acute and chronic ear infections, due to religious customs of putting daily coconut oil in the ears of the children, and consanguinity. Additional factors were low birth weight, malnutrition, lack of perinatal care and premature births. A 10 minute documentary was made called “Silent Village,” a short version can be viewed on the PDI website.

2003-4 The “Silent Village” visit brought to the fore the need for vaccinations. This has lead PDI to the goal of vaccinating preadolescent girls with MR (measles, rubella) vaccine.  At the encouragement of CDC-Atlanta and Dr. Lou Cooper, I went to India to pursue an MR vaccination program.  I learned that the SERUM INSTITUTE OF INDIA in Pune city was one of the major suppliers of vaccines in the world. They agreed to supply vaccine at half cost to use in a pilot program in Pune for the vaccination of preadolescent girls. It was determined that this included 200,000 girls and the cost would amount to US$200,000 including the cost of nurses, syringes, database management etc., which far exceeded the funds available from of Rotary International.  With the help of Dr. Cooper, I approached UNICEF, WHO, RED CROSS and other agencies with counterparts in India with no success for funding. I realize that funding has to come from the government of India or a major charitable source such as the Gates Foundation who has recently donated $750 million for vaccination of children in developing nations.

I am in a hurry to achieve this goal, as at the age of 82 my crackling bones cannot manage the 25 hour trip to India as they used to!

Hindu Daily News Sunday Jan. 18, 2004

Chennai, Jan. 17. Most storied begin with a bang, or a whimper. But this one started with silence— the accidental silence of Dr. Raj Desai’s fourth child. Anjali, born in 1964.

It was an accident that Pratima Desai contracted German Measles from a neighbor who dropped into their home in Boston, U.S. Unfortunately, Ms. Desai, or rather, her fourth-born—Anjali—became a victim of the Rubella epidemic that was sweeping across the U.S.

This diverted the Indian oncologist from his study of carcinogenic cells onto rehabilitation of person with hearing impairment. He stumbled on Gallaudet University, Washington, a varsity for the deaf and discovered that the best way to teach his child was to use a combination of sign language, lip reading and speech.

When Anjali went on to acquire a master’s degree and work at Gallaudet University, Dr. Desai did not think his task complete.

In fact, that is when the India chapter of the story began. He was attracted by a newspaper article about two villages in Hubli, Karnataka—Sulalli and Basavanakoppa—in which more than 30 percent of the population was deaf. Dr. Desai and his team of Rotarians discovered that the primary causes of deafness were water (single source) pollution, inbreeding and chronic ear infections caused by pouring coconut oil into the ears of infants.

This time, Dr. Desai, had to contend with the silent worlds of hundred of children. He started Project Deaf India and with funds from Rotary Clubs, his team dug three sub-terranean wells providing pure water, established a school and health clinic and distributed hearing aids to the children..

Soon, the changes began to show. The wells brought water to the villagers and hearing aids, sound. “The transformation was magical. Children told me they could hear the birds sing again,” Dr. Desai says.

Not one to rest on his laurels, the octogenarian is presently working to vaccinate teenage girls against German Measles. Mobil vans also comb the villages in and around Mysore to detect deafness in children.

“Every child has some residual hearing. We have to give him/her a fair chance and the right training to develop,” Dr. Desai says.

In quite the manner of warrior on a battlefield, he believes that it is his task to ensure that every deaf child in the country gets that chance.