A-Z

Screening for sickle cell and beta thalassaemia

Messages to other parents

Almost everybody we spoke to thought screening for sickle cell and beta thalassaemia was a good idea and they were glad they'd had the tests, whatever their results. Most recommended that other parents should think seriously about being screened, to be prepared and informed about their child's health. They acknowledged that everyone has different views and has to make a decision that is right for them personally, but they still felt screening and diagnosis enable you to make informed choices and do the best for your child. As one mother said, 'I wouldn't have an abortion… Other people would think it's the best way, termination would be best for them… I think for each individual it's best to have the screening… If you want to keep the baby, it's better to be prepared and knowing, than not to be prepared and be shocked and sad.' Several felt it was very important for parents to act responsibly and to make sure their children knew about their own carrier status before they grew up.
 

Screening helps parents find out as much as they can about their children's health.

Screening helps parents find out as much as they can about their children's health.

Age at interview: 37
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
English translation, video and audio clips in Urdu.

I think everything is covered, but I would like to make a request to those parents who think that we should not know. Look, your children' as long as it is in your hands, we have to care for the child, we have to educate them, and this is all there is. What do we give our children? We bring them up. Everyone's children grow up, but good parenting is everything. Use whatever knowledge you have, and obviously knowledge is not useless. This is the thing. And we were not bothered when we didn't know, because, thank God, this is not a problem, but at least we can tell our daughter in the future. Now it's up to her to act on it, but it is our duty to tell her. And if she marries according to our choice, then we will put this forward first. Everything is on one side, but the future, whoever your future is with, you should have this much information about them.

 

People have different views, but screening helps you be prepared, even if you would not end a...

People have different views, but screening helps you be prepared, even if you would not end a...

Age at interview: 29
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
Some people say they don't want to have screening because they don't want to know if there's a problem with their baby. Either because they know they would never do anything about it, like you're saying, or because they don't want the anxiety during pregnancy, of knowing that something may be wrong. Does that worry you, that idea that you've then got the rest of the pregnancy to worry?

Well, people have different, you know, opinions about certain things. Well it's a very difficult question. But I don't, basically, I think - I'm still not worried, basically, about the pregnancy. I'm not. Because - it's very difficult, basically, it is. On the whole it doesn't really affect me, or affect us in any way. It doesn't. Because at the end of the day whether you take the screening or not, whatever is there is there. So I think taking it is better. It gives you that kind of, an idea of what, what might happen to the baby, and then you prepare for that, rather than - you know, if, if you had actually taken it, they might, they could have, maybe there are some diseases or some sicknesses they could have actually, you know, do something about it. 

So I think it's a good idea, taking it before, before birth, rather than after birth, because maybe it might be too late taking it after birth. So I - but that's what I'm saying. People are all so different. They might, some people obviously go through the anxiety as you've just said. So they think they cannot take it, so they have to do it after birth. So that kind of - some people are different. But to me, I think to take it before birth is fine. It's a good idea.

 

Choice is really important. Screening and diagnosis help you make choices, whatever your opinions...

Choice is really important. Screening and diagnosis help you make choices, whatever your opinions...

Age at interview: 41
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT

Video and audio clips read by an actor.

It's good for you to still have the screening, just to be able to be informed. I mean, at the end of the day it's still people's choice whether they want to or not, but to me I would have said it's good to know. To me it was good for me to know, anyway. Even though I decided to go ahead anyway, it was good for me to get myself prepared to start thinking about, “Okay, what does the future hold?” you know. 

And if people have choices what to do- I'm a stickler for choices. I'm for choices. I would have said that I would encourage people to have this screening just to be able to - especially if you've got sickle cell - just to be able to be prepared with what will come. And maybe make a decision. I mean, my decision was that I didn't want to go ahead with a termination. But if someone said they wanted to go ahead with it, if I knew someone who said they wanted to go ahead with it, I will tell them my experience, but I wouldn't say, “Stop.” I wouldn't say, “Oh well, that's the wrong thing to do.” Because at the end of the day, it's the way you feel, not what someone will tell you. It's the way you feel and maybe you talk it through with your partner, your husband.

 

The baby's health is the most important thing. Parents have to act responsibly and inform themselves. [A saude du bebé o mais importante. Os pais tem que actuar com responsabilidade.]

The baby's health is the most important thing. Parents have to act responsibly and inform themselves. [A saude du bebé o mais importante. Os pais tem que actuar com responsabilidade.]

SHOW TEXT VERSION
PRINT TRANSCRIPT
English translation, video and audio clip in Portuguese'

So the last question is' Would you like to share with us something that I haven't asked about yet and do you have any suggestions to other people that might be in the same situation? For example would you suggest to people to do the test during pregnancy?

Mother' Especially during pregnancy it's necessary to have a lot of care and having a lot of information about what you wish to know. Pregnancy is very important and you should do things strictly, eat properly, avoid excess, avoid exercising too hard, and do a lot of exercise, it depends. One should have a lot of care and pay attention to the results of the tests. Yes, that would be good.

So would you would suggest to people to do the tests and to pay more attention to pregnancy?

Mother' Yes, pregnancy is great, 'We are going to have a child' - but to have a child we need to see what is going to happen, and we need to be prepared for what can happen.

Father' I think that there are a lot of parents that want to be parents because of the baby. They forget that they are going to have a human being, that is a child, that is a baby.

Mother' You have to take care.

Father' He is going to depend on the parents; he is going to depend on the mother and father. You have to pay attention to him. I think before getting pregnant one should think twice.

Mother' Of course; and after the baby is born, never let, for example, any news about the baby, he can have this or the other, never let it go, always try to find out more'

Father' More information'

Mother' Really take care of the child.

Portuguese original'

Ent'o a 'ltima pergunta e sobre se quer partilhar alguma coisa que eu n'o tenha perguntado, e se tem algumas sugest'es para outras pessoas que passem pela sua situa''o e aconselharia as pessoas a fazer um exame, antes na altura da gravidez?

Mother' Principalmente na altura da gravidez e preciso ter muito cuidado e ter muita informa''o sobre aquilo que se quer saber. A gravidez e muito importante e deve-se seguir as coisa a risca, a alimenta''o, ter cuidado com o excesso, a for'a, fazer muito exercicio, por exemplo depende. Deve-se ter cuidado durante a gravidez e ter muita aten''o aos exames' acho que e muito bom.

Ent'o aconselharia as pessoas a fazerem os exames e a darem mais atencao a gravidez?

Mother' Sim que a gravidez e muito gira, vamos ter uma crian'a, mas para ter a crian'a a gente tem de ver o que pode acontecer e tem de estar preparado para isso.

Father' Eu penso que h' muitos pais que querem ser os pais por causa de ter bebe. Esque'em que o que eles v'o ter e um ser humano ... que e uma crian'a, que ' um beb'

Mother' tem de se cuidar...

Father' Ele vai depender dos pais, vai depender da m'e e do pai. Tem que lhe dar aten''o. Eu acho q
 

Any test that gives you information about your baby's health is definitely worth doing.

Any test that gives you information about your baby's health is definitely worth doing.

SHOW TEXT VERSION
PRINT TRANSCRIPT
Are you glad you found out? Because I mean in a way you need never have known, in a sense, because he's not ill, you're not ill.

Father' Well, we've been fortunate because everything's gone our way. If things hadn't gone our way then definitely I would have wanted to know. We've been lucky that everything is OK, and it hasn't made a great deal of difference to our lives. But obviously if, you know, we had both been carriers, there's a risk to a child in the future then, yeah, definitely, definitely.

So what would you say to other parents thinking about'?

Father' Well, anything that benefits you and your baby, definitely, 100%, have it done. Because at the end of the day if you don't know there is a problem and you could have done something about it, you're only going to kick yourself and feel gutted at a later time. So, definitely.

 

The sickle cell carrier test is easy to do, so she'd recommend it to everyone. [Le test pour les porteurs de la drépanocytose est facile à faire, alors elle le recommenderait à tout le monde].

Text only
Read below

The sickle cell carrier test is easy to do, so she'd recommend it to everyone. [Le test pour les porteurs de la drépanocytose est facile à faire, alors elle le recommenderait à tout le monde].

Age at interview: 36
Sex: Female
HIDE TEXT
PRINT TRANSCRIPT
English translation'

In effect, the test for sickle cell is easy to do. And if you're doing tests, blood tests and various tests during pregnancy, and it's possible to do it easily, I would recommend to anyone to do it. If it can have consequences for the children it's better to know. Absolutely. If I had to do it again I would.

French original'

Effectivement, c'est, le test pour la dr'panocytose c'est facile ' faire. Et si on fait des tests, des prises de sang et des tests vari's pendant la grossesse, c'est qu'on a la possibilit' de le faire facilement, moi je recommenderais ' tout le monde de le faire. Si '' peut avoir des cons'quences pour les enfants il vaut mieux le savoir. Absolument. Si je devais recommencer je le ferais.
 
 

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

Text only
Read below

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

Age at interview: 26
Sex: Female
HIDE TEXT
PRINT TRANSCRIPT
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 Allah's will.

Meaning, you should not have termination?

You should not do it.

Several people said their experiences of seeing family or friends with the conditions made them feel all the more strongly that screening was the right thing to do.
 

Having seen the effects of sickle cell anaemia in her family, she thinks screening is the best...

Having seen the effects of sickle cell anaemia in her family, she thinks screening is the best...

Age at interview: 36
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
Well, my, [pause] my advice would be just do it. Just do it. I mean, if not for the parents, if not for the effects that it might have on the parents themselves, think about the future quality of life that the children are going to have. 

Even if, at the end of the day, one decides to go along with the pregnancy, then you are prepared. You know all your info how to mange it, you know how to manage yourself. You know, you are aware of the care and support around you, you've prepared yourself. So it's, it's the best decision any mother can make, any parent can make. Especially when you have something like sickle cell to deal with. I have only been lucky. Suppose I wasn't. I've had families that have died just because they don't have the care, support and medical support that they should have got in to deal with it. I have, one of my uncles has survived it up till 6, 9 years [ago] but that was because he was could afford the, the medical [pause] things, support that he needed. But suppose you can't and,you've taken the test on time and you've made a decision to keep the child or not - it would help you to make that decision and be prepared. 

 

Beta thalassaemia major is a very serious condition, and she would advise parents to think about...

Beta thalassaemia major is a very serious condition, and she would advise parents to think about...

Age at interview: 29
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT

Video and audio clips read by an actor. 

Are you glad that you found out, or do you sometimes wish you hadn't?

No, I'm really glad that I did know. And I'm really glad I found out before I was married. Because I think it was you know, equal responsibility then, really, and the burden wasn't on me, that I knew and I didn't tell him. Because it's something that would have affected us both, really, afterwards. 

OK. Would you think other parents should go for screening?

I would advise them to go for the screening, really. Simply because I have seen the impact thalassaemia can have on families themselves, really. I know I don't have it myself, but one of our close friends did have it and the impact - and the impact it's still having on their family as well - is quite large. And it's not a small thing, and it's something that affects them throughout their lives. And, you know, thalassaemia major, you know, I think it is a major condition, really, that people should really think about before they have children and should definitely have screening, really.

Timing of screening was an important issue. Many people would have preferred screening before they got into a relationship with someone, or before pregnancy. (See 'Telling people - implications for relationships and marriage'). If screening happens during pregnancy, several people stressed how important it was for it to happen as early as possible. (See also 'Timing and delay').
 

The earlier you are screened in pregnancy the better, so you have time to make decisions. (Read...

The earlier you are screened in pregnancy the better, so you have time to make decisions. (Read...

Age at interview: 29
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT

Video and audio clips read by an actor.

I suppose it's good to have that knowledge and you know what you're getting yourself into. And so if you've got the knowledge, you can make a definite decision for yourself. I think if you don't know, then you sometimes get into that thing where it's too late to make a decision. And so whereas if you know, you know with your eyes open, “This is what it entails, and this is what's going to happen if you do go ahead with it.” And if you know the worst case scenario, then you can judge how you want to go about doing it. 

So I think it's very important that this information's there, and it is going out to a lot of people, and they are picking up on it. And I think from when I got tested and from when I had a phone call from local Health Centre, it was quite quick. You know, it was quite early on in pregnancy that they picked it up, maybe before the first twelve week, fifteen week scan. So they are trying, they are trying to get to those people quite quickly and make you aware, to make that right decision. So that's good. And it's helpful. 

 

Women should check if they are pregnant as soon as possible, so they can have screening and...

Women should check if they are pregnant as soon as possible, so they can have screening and...

Age at interview: 31
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT

English translation, video and audio clips in Mirpuri, read by an actor.

If we could put the clock back for you, if you went back in time, what would you do differently?

I wouldn't do it differently, because I am a Muslim and I am afraid. My heart could not agree to do this when I'm over four or four and a half months. Yes, the individual's life is difficult. I cannot think that I could go over. It just cannot be that I would let it go over three months [to have prenatal diagnosis], because there are cures. You could go to the clinic. You could get things from Morrisons [supermarket] to check yourself, to find out whether you are pregnant or not. If you spend nine or ten points, you get something too. Then it tells you whether you are pregnant or not. It's not hard.

So you mean that you would have testing sooner?

Yes, I cannot think about not testing within six, seven weeks. I can do it.

You can do it yourself.

Yes. Any person can do it. It's easy. Now there are clinics there on Tuesday and on Friday. You can go any day. It takes a little time and then they tell you whether you are pregnant or not.

If there is a couple like you where both husband and wife are carriers, and if they are thinking about what to do because they are both carriers, 'Should we have testing or not? Should we have termination or not if the baby has thalassaemia?', then what would your message be for them?

As far as my message goes, I would say, 'Have it. Have it checked. I mean have it checked within eleven weeks, and yes, if your child is major, then have a miscarriage [termination]. Nothing will happen. Eleven weeks is nothing, I mean, the soul has not entered the child yet, so it's not hard.'

Why would you recommend termination? 

Because if your child is Major, then it will be very, very hard work for you. I mean, it becomes hard. If he is major, he has to have blood, he could get something else. He could get any other disease. That's why.

Footnote' The mother in this interview used the English word 'miscarriage'. However, it was clear from the interview that she was using this term to mean an early surgical termination. She distinguished between this and termination later in pregnancy by induced labour, which would not have been acceptable to her.

A few people commented that screening in pregnancy can make you anxious and that for some parents it might be better to wait until after the birth to find out if anything is wrong with the baby, especially if they would never consider a termination anyway. (See also 'Continuing with an affected or at risk pregnancy'). One father commented that discovering you are a carrier brings up worrying decisions you would otherwise not have to think about, especially in cases like theirs where the baby turns out to be unaffected. He thought that in some ways it might be nicer to go through pregnancy without realising anything could be wrong, although personally he was glad to have had the information.
 

Screening raises worries and choices you would otherwise not have, especially if the baby is in...

Screening raises worries and choices you would otherwise not have, especially if the baby is in...

SHOW TEXT VERSION
PRINT TRANSCRIPT
Did either of you talk to family members while you were waiting for the results to --

Father' All the time, yeah, she'd be phoning Vietnam all the time, to her sisters and her mother. And I'd be talking to my friends basically. Again talking to people in Vietnam they just think, they just never, they can't visualise it, you know? It's just totally unknown to them. So I think in south-east Asia this sort of condition is, it's not widely known, do you know what I mean? And so over there it's just, it's a bit strange to have this sort of problem. But I think the problem we had talking to people as well is that too much knowledge is quite - you know what I mean? And I think there's probably a couple like us in Vietnam somewhere, who probably have the condition but have just gone ahead with it and had a healthy baby and just never realised there was a potential risk, I think. So all these tests bring out all these new scenarios, you know, and it put pressure on. Whereas sometimes not knowing it, just going ahead with it is , might be good, you know what I mean?

Yes, I mean I suppose that's the other point of view, isn't it? That actually it might be better never to know?

Father' Yeah, and just, just --

Do you, do you ever think --

Father' Well, for my part I don't think so, because at the end of the day, you know, if the baby come out not well then, you know, then there's not - what's the point? But sometimes, you know, it may be easier. No, not from our perspective. From our perspective maybe it's better to know, but in a way you wish, you know, you never knew and, you know, you'd just gone ahead with it, and you just take the chance basically. But I think I prefer to know. But now you know it, you can't go backwards sort of thing.

Last reviewed December 2018.

donate
Previous Page
Next Page