Thalassemia is the most common congenital disorder in Bangladesh. It is estimated that nearly 14,000 children with thalassemia are born every year in our country. Ten percent of our population are carriers of the disease, while in the tribal population more than 30% are carriers.

Children suffering from thalassemia especially thalassemia major and severe types of Hb E beta-thalassemia patients, require regular blood transfusions, some within fifteen days and others every month. Regular transfusion of blood leads to an increase in the content of iron in the blood, which is toxic and collects in the major organs of the body like liver, endocrine glands, etc., leading to their failure to function. To remove the iron, one has to be treated with drugs.

These drugs are expensive and not affordable by the majority of our patients. Most of these patients die early. The psychological and financial strain are tremendous.

Prenatal diagnosis prevents the birth of thalassemic children. It is the best solution to eliminate the disease. However, efforts to prevent the birth of thalassemic children by creating awareness, discouraging marriage between carriers or identify carrier couples before marriage, and offering counselling to separate have had limited success in Iran and other countries.

Prenatal diagnosis and abortion of affected foetuses have been most effective in preventing the birth of thalassemic children as seen in many countries of the world, like Cyprus, Greece, and Iran (after the introduction of prenatal procedure).  Prenatal diagnosis is the only way to know before birth whether the foetus has thalassemia or not, and abortion is advised if the foetus has thalassemia, but the final decision is with the parents to make a choice.

Bangladesh Shishu Hospital had a DNA lab for prenatal diagnosis of mothers where both the couples were carriers and abortion was advised if the foetus tested positive for thalassemic.

Unfortunately, as the machines are out of order, DNA analysis as a prenatal diagnosis procedure has stopped for the last one year (the lab was established about five years ago).

Earlier, a total of three hundred prenatal procedures were done. Couples were getting aware of this procedure and its use was increasing, particularly among parents having  thalassemic children.

This has affected many poor couples who cannot afford the cost of a private lab. The service needs to be reinstated at the tertiary institute like Bangladesh Shishu Hospital & Institute soon for the prevention of thalassemia in Bangladesh.

The writer is the former President of Dhaka Shishu Hospital Thalassaemia Centre.

Email: waqarkind@gmail.com