Thalassaemia Major is a serious problem

Thalassaemia Major is a serious, genetic, life threatening blood disorder, which affects more than 1 lakh children in the country. Children are born with the disorder, and unless monitored properly, will not survive. In the Indian situation, very few children survive beyond the age of 20.Thalassaemia Major is a blood disorder in which the Red Blood Cells (RBCs) get prematurely destroyed. Red Blood Cells play the vital role of carrying the oxygen, that is so essential for existence, all over the body. So having Thalassaemia Major amounts to not being able to reach oxygen to the body, which, as is obvious, will lead to death.Children suffering from the disorder are required to be given blood transfusions, through which they receive the vital RBCs required by them.

These transfusions are required to be taken regularly throughout the life of the child. The frequency of transfusions increases as the child grows, but on an average, the child is given transfusions every 15 days.Transfusions, without which the child cannot survive, result in an undesirable build up of iron in the body, which can be fatal. The child is required to dispose off the excess iron (iron chelation). The prescribed treatment is
.for the child to take an injection of 'Desferal', every day of it's life. And, this injection is given by a special pump over a period of 8 -10- hours.Considering the regular transfusions, the daily injections, and the risk of blood transmissible diseases, the life of a child suffering there is nothing wrong with him/her. And so is the case likely to be with the spouse. They lead very normal lives, till they have a child with Thalassaemia Major. Their world comes crashing down, and they also learn that their ignorance of being 'Minors' was the cause of this tragedy.

What does one do if both partners in a marriage are Thalassaemia Minor?

When both partners in a marriage are Thalassaemia Minor, there is a 'one-in-four' chance that the child born to them will be a Thalassaemia Major. This is true of every pregnancy. One of the options is for the couple to adopt a child, and not take any risk. If they plan to have their own (biological) child, then the woman should go for a Pre- Natal test very early in the pregnancy and:
1. continue with the pregnancy if the foetus is not Thalassaemia Major.
2. terminate the pregnancy, as medically advised, if the fetus is Thalassaemia Major.

What is the moral of the story?

The moral of the story is that ...
1. Every person should do a Blood Test for Thalassaemia Minor, no matter how healthy he/she is. This test needs to be done only once, at any  time in ones life, but preferably before getting married.
2. If one is a Thalassaemia Minor, one should find out if the spouse or spouse-to-be is also a Minor.

3. If both partners in a marriage are Thalassaemia Minor, and plan to have a child, then the woman must go for a PreNatal Test very early in the pregnancy.

HEALTH POSITIVE. The situation in Mumbai
There are more than 700 children in Mumbai suffering from Thalassaemia Major, who require regular blood transfusions for their survival. The Centres, which today provide treatment to Thalassaemia Major children are St. George's Hospital, Indian Red Cross, Nair Hospital, KE.M. Hospital, Wadia Hospital, Sion Hospital, Nanavati Hospital, Pooja Blood Bank, Dr. M.B. Agarwal's Clinic, Dr. Sunil Parekhs Clinic. These Centers have Day care facilities for Thalassaemia Major children, whereas there are other Hospitals where the children have to get admitted for their transfusions.
Children attached to Day Care Centres are normally notified about their next transfusion at the time of the earlier transfusion. They are require to report at the Centre in the morning at which time blood matching is done. The children receive their transfusions a little later and the transfusions take from 2 - 3 hours.

There is a dire need for:

1. More Day Care Centres. Other Hospitals will have to agree and set up Day Care Centres.
2. Improved facilities in the existing Day Care Centres in terms of treatment and facilities like Air Conditioners, Reclining Chairs, Televisions, Games etc.
The Government of Maharashtra
The Government of Maharashtra has been a pioneering State with respect to treatment of Thalassaemic children. The Health Minister, Shri Digvijay Khanvilkar and the Directorate of Health Services has formulated a clear-cut plan for Thalassaemia.            .
The Government has already announced free blood to all Thalassaemia Major children. Directives have been given to all Blood Banks, and  Identity Cards issued to all children, to facilitate the same.