Interview 08

Mother tested in first pregnancy and discovered she was a beta thalassaemia carrier. Husband was also tested and is not a carrier. Both their daughters are carriers. Interview translated into English from original in Urdu and Mirpuri.

This mother was tested during her first pregnancy as part of her routine antenatal care, and discovered she was a beta thalassaemia carrier. Her husband then went for partner screening, because they knew if they were both carriers there was a risk that their children might have beta thalassaemia major and be very ill. They were both upset and worried at first, but once the husband was found not to be a carrier they felt reassured. Both their daughters have had newborn screening, and both are also beta thalassaemia carriers like their mother. One of the girls sometimes feels a bit tired and listless, but they have no serious health problems and just take care to eat healthily.
The mother believes screening and antenatal diagnosis are useful to help parents prepare for the possibility that they may have a child with beta thalassaemia major. However, as a Muslim she feels it would be wrong to terminate the pregnancy if the unborn baby were affected.
Before arranging a marriage for their daughters, the couple would want to check first if the man was also a carrier. They would not want to go ahead with the marriage in this case.
Interview translated into English from original in Urdu and Mirpuri.

It is better to know in advance if your child has beta thalassaemia major, but as a Muslim she is…

Age at interview 26

Gender Female

Original translated into English from Mirpuri and Urdu.

If a woman is told that she has thalassaemia [is a carrier] like you and if her husband is also found to have this as well, if they ask you for advice about what to do, then what would you say to such a women? Should she have this test to find out whether the baby has the condition or not?

She should have testing.

Why do you think it should be done?

Why should it be done? Because the child could have a lot of problems and then the mother could have a lot of problems, because of the child. That’s why the mother should know in advance that ‘my child has this problem. She could be mentally prepared.

Right, right.

She should understand that ‘my child is like this’, and she would have fewer problems.

And how do you mean she would have fewer problems?

If you suddenly find out, then one becomes more worried. If you know in advance, then you are less worried.

And if you find out that the child’ say for example that such a woman has a test and finds out that the child has the condition, then doctors also say that you can have a termination, for such a condition. What do you think about this?

What do I think? You should not have termination. Whatever happens is Allahs will.

Meaning, you should not have termination?

You should not do it.

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Their doctor advised her husband to be screened too and said that being a carrier was important…

Age at interview 26

Gender Female

Original translated into English from Mirpuri and Urdu.

And, did your husband have the test? And when did he have it, how did he have it?

When I found out that I have this problem, then he was tested as well, and he was okay.

And why was he tested?

Because the doctor said that he should have it as well, because you could have disabled children. And if your children have this problem, and if you arrange their marriage, then you should test the other family first.

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