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New Delhi

Survey on birth defects..

The March of Dimes's survey says that about eight million children worldwide are born with serious birth defects every year, many of them dying before the age of 5.

According to a research released by the organization most birth defects occur in poor countries, where babies can languish with problems easily fixed or even prevented in wealthier nations. The researchers also said that some innovative programmes in Iran and Chile show that effective preventions do not have to be costly.

The study concluded that about 70 per cent of birth defects could be prevented, repaired or ameliorated. The March of Dimes sponsored the five-year project after doctors complained that birth defects were often ignored as a public health problem

Epidemiologist, Christopher Howson, said that they were surprised by the toll. He said that it was like the tip of the iceberg only noticeable after the infant mortality from other causes drops. Some 7.9 million children are born in a year with serious birth defects caused at least partly by a genetic flaw, such as heart defects, spina bifida and other neural tube defects, sickle cell anemia and Down syndrome.

Undoubtedly hundreds of thousand more are born with defects caused not by genes but by post-conception problems: mothers infected with rubella or syphilis, which can damage their babies' brains, lack of dietary iodine.

At least 3.3 million children under the age of 5 die each year because of birth defects and millions more are mentally or physically disabled. It's prevalence ranges from a high of 82 defects per 1,000 births in Sudan to a low of 39.7 per 1,000 in France.

The researchers cautioned that the data was not precise enough for detailed country-by-country comparisons but cited poor maternal health care, a higher percentage of older mothers and greater frequency of marriage between relatives as leading risks in low-and middle-income countries.

Additionally populations from Africa, Eastern Mediterranean and Southeast Asia were most at-risk of the common inherited diseases like thalassemia, sickle cell and the metabolic disease G6PD. The report takes no stand on abortion.

But it also found that Down syndrome is roughly twice as common in poorer countries, which lack prenatal testing, while half of the affected pregnancies in Western Europe are terminated following prenatal diagnosis.

Dr Arnold Christianson of South Africa's University Witwatersrand said that every mother-to-be has about a 5 per cent chance of having a baby with a serious birth defect.

That risk can rise or fall, depending on a host of circumstances:

  1. Does she take folic acid, a nutritional supplement that fights neural tube defects?
  2. Is she vaccinated against rubella?
  3. Does she have uncontrolled diabetes or other pregnancy-harming illnesses?
  4. Is she well nourished?
  5. Are her pregnancies spaced far enough apart?

Christianson said that if the mother can be as fit and well as possible at the time of conception it reduces the risk of a birth defect.

Recommendations

  • Improved health care for all women, with special emphasis on pregnancy nutrition.
  • Improved family planning and birth defect education. In Johannesburg, surveys show that less than 40 per cent of African women know what Down syndrome is, much less that its risk rises with pregnancies after the age of 35.
  • Proper care of affected babies. In South Africa, for example, 55 percent of babies with Down syndrome die before their first birthday. The median US survival age is 51, up from age 3 in the 1960s thanks to improved care.

Source: 8m with birth defects each year. The Hindustan Times, New Delhi, 1 February 2006.

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Relief for the blind students..

According to some reports, just 5% of the millions of blind children in the country get an education. And it is an uphill struggle for them. Recently, the University Grants Commission - the apex regulatory body for university education in the country - paved the way for visually impaired students to be given the option of using a computer to write answers during exams.

UGC's stance follows a similar instruction from the Central Board of Education (CBSC) allowing candidates from Delhi to use PCs or typewriters during exams. Till recently, the visually impaired needed to depend on scribes or writers for examinations, a system that is fraught with problems.

A switch to computers, however, will do little to change the plight of the visually impaired, unless institutions back this up with some progressive support. Examinations are in fact just one part of what is a daily struggle for the visually impaired. Take the most basic need any student has - books. There is no accessibility of reading and study material in India.

In the absence of these, visually-impaired students are left to the mercy of others - parents, friends and teachers who are willing to read to them, or spend hours scanning page after page of text books to be loaded on to computers so that screen-reading software (which allows the blind and visually-impaired to access information on their PCs either by voice or through Braille or both) can be used.

Given this reality, it's no surprise that only a few visually impaired students make it to college and university campuses. Bit by bit, the National Association for the Blind is trying to change this. NAB Delhi has been using its in-house mini-computerized Braille press to publish textbooks and literature of general interest.

All year round, the organization gets special requests from school and college students for transcriptions. Already, NAB has covered substantial college-level material in subjects like history, political science, English and BEd.

With the help of Media Lab Asia it hopes to provide material in 12 other subjects, which have been identified as popular choices of visually impaired students, within the next three years. These include Hindi, Sanskrit, Sociology, philosophy, law and social work.

This uphill task has a surprisingly simple solution. Dipendra Manocha, director of IT and services at NAB Delhi, said that publishers of books used in a national curricula need to provide digital content in a specified format and submit it to a central repository for the purpose of Braille and talking books production and it was as simple as that.

He said that still, the UGC and the CBSE's stance has come as a ray of hope, though it will be a while before students can take full advantage of the change. Very few visually impaired students today are capable of giving exams on a PC.

NAB Delhi has been working with the Delhi University - under which it believes 200 visually impaired students study - to bring about just such a change. Mr. Manocha said that the students needed to be trained to work on computers so they have the confidence to attempt exams in this manner.

NAB Delhi hopes that by 2007 they will have the training in place to transition DU's students to computer-based exams. Apart from training, another problem that some foresee in using technology to give visually impaired students greater academic independence is infrastructure.

TD Dhariyal, deputy chief commissioner, Office of the Chief Commissioner for Persons with Disabilities said that implementing this option should not be a problem; the only problem that could emerge was if the colleges were asked to provide computers themselves. Again the solution seemed surprisingly simple.

Mr. Manocha pointed to schemes and funds allocated by the UGC for colleges to set up computer labs. He said that colleges were not aware of these schemes… applications have not been coming to the UGC.

Source: Turning a Blind Eye. Economic Times, New Delhi, 6 February 2006.

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