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Interview 14

Age at interview: 31
Brief Outline: Mother discovered she was a sickle cell carrier in her first pregnancy. Father is not a carrier. He later changed his name and was recalled for screening when she was pregnant again. Audio clips in French.
Background: Cleaning company supervisor and social work student, married with two children aged 5 and 3. Ethnic background/nationality' Black African (Congo).

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This mother was screened as part of her routine antenatal care in her first pregnancy. She did not feel she had been fully informed about the purpose of all the tests, so she was shocked to get a letter saying she was a sickle cell carrier. She had been taught about sickle cell when she was at secondary school in the Congo, but she did not know the English term 'sickle cell', only the French term 'la dr'panocytose'. So when she got her test results she did not understand what it meant and was very worried. She went with her partner for counselling, and the counsellor was able to translate it for her and explain. The specialist sickle cell clinic gave her much better information than she had had from the midwives.

Her partner was screened and is not a carrier. Her first son had newborn screening and was also found to be a carrier. In her second pregnancy her partner was called again for carrier screening, because he had changed his name and it was believed he was a new partner. They called to explain that he was the same person and that he did not need to tested again.

She has a friend who has a son with sickle cell anaemia, and she has seen how stressful family life is for her friend. If she had known earlier that she was a sickle cell carrier, she would have asked her husband to be tested before they got married. She recommends this to other people. Although it is very difficult to separate from someone you are in a relationship with, she thinks it is better than seeing your child in pain. She personally would not have considered terminating a pregnancy if she had discovered her unborn baby had sickle cell anaemia. She believes it is very important that there should be more awareness of sickle cell in society, and that midwives should give parents more detailed information about carrier screening.

 

Her husband changed his name, so he was called for screening again. They called the hospital to...

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English translation:

My husband was called for screening twice - why? Because he had changed his name. He'd changed his name. When I had my first son, he had another name, and after changing his name, the new name wasn't in his records, so they thought that he was perhaps another husband, so that's it.

And how was that when they called, was it easy for him to accept having another test?

No he didn't have the test twice. When they called, they sent the form for him to have another test, but we said to ourselves that the results will be the same, because it's not something that changes, so we called the hopsital to tell them it was the same person. It was just his name that had changed.

French original:

Mon mari a été appelé deux fois, pourquoi? Parce qu’il avait changé son nom. Il avait changé de nom. Quand j’ai accouché de mon premier fils, il avait un autre nom et après avoir changé son nom le nouveau nom n’était pas dans le record, dans son record, donc ils pensaient que c’était peut-être un autre mari, voilà.

Et comment ça a été lorsqu’on l’a rappelé, c’était plus facile pour lui d’accepter le diagnostic?

Non il n’a pas passé le test deux fois. Oui. Quand on a appelé, ils ont envoyé la forme qu’il allait passer le test encore, mais on s’est dit que les résultats sont les mêmes, puisque ça ne change pas, donc on a appelé l’hôpital pour leur dire que c’est la même personne. C’est le nom seulement qui avait changé.

 

 

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English translation:

Well, it was when I was pregnant with my first son, I was 25, and at the time when I did my blood tests, it was then that they did a test for sickle cell, but I didn't know what it was for, because they used the English words 'sickle cell', so I still didn't know. It was the first time, I still didn't know what it was. And afterwards when I got the result it said I was 'sickle cell trait', and that day I felt as if I was ill, I was asking myself 'But what is this? What illness is this? What is it?' Anyway I was very traumatised. I even had an exam that day, but I was anxious. I went in to college, when I came back, when they sent me the results they asked me to contact a clinic. So I went there, and afterwards they called and made an appointment, we went, and it's there that they started to explain to us. And the woman who saw us knew what the translation in French was. She told me it was sickle cell and that it's not - that it's an illness where - sickle cell - it's when you are really anaemic. But as far as sickle cell trait is concerned, I wasn't to see it as having an illness. 

Absolutely.

Yes. So that helped raise my spirits again, because I was really down about it.

But if I can interrupt and ask the question, the first time, with the first baby, they told you there was something not quite normal, but did they explain more to you when you got the results from the blood tests you'd had at the start?

No, no, no. They just said, 'The blood test which you did shows you are sickle cell trait.' Yes. So I didn't have any other information, which was why I was so stunned by the news, because I didn't understand it at all, I didn't know what it was.

So it's clear that before you were 25 you knew absolutely nothing about it?

I knew nothing. It was at the moment when she talked about sickle cell that I remembered, because I learnt about it at school. Then I remembered about SS [sickle cell anaemia], all the things I'd learnt at school, and then I understood. 

Yes, but can I ask, you learnt that at school here in the UK, or in Congo?

In Congo, in the third grade.

They showed us drawings to help us understand. It was like photos and everything, they explained, they showed us what happens with a person who's AA [is not a carrier] and what happens when you have children and everything. So, that really helped us too. So afterwards when my husband had done the blood test, they sent us the result saying he was AA and that there was no problem.

Footnote: people often need help in understanding the difference between being a carrier, which is not an illness and does not affect your health, and having the condition. The word 'trait' is sometimes used to describe carrier status. 

French original:

En fait, c’est quand j’étais enceinte de mon premier fils, j’avais 25 ans et au moment ou je faisais mes blood tests, c’est là où ils m’ont fait un test pour détecter la drépanocytose mais je ne savais pas qu’il s’agissait de la drépanocytose parce que c’était ‘sickle cell’, donc je ne savais pas encore. C’était la première fois, je ne savais pas encore ce que c’était. Et après quand j’ai reçu le résultat on me dit que je suis sickle cell trait, le jour là j’étais comme malade, je me demandais, ‘Mais c’est quoi ? Mais c’est quelle maladie? Mais c’est quoi?’ En tout cas j’étais très traumatisée. J’avais même un examen ce jour là mais je n’étais pas à l’aise. Je suis allée à l’école, quand je suis revenue, quand ils m’ont envoyé les résultats ils m’ont demandé de contacter une clinique. Donc j’y suis allée et après on a appelé, on a pris rendez-vous, on est parti, c’est là ou ils ont commencé à nous expliquer, et la dame qui nous a reçu savait la traduction de sickle cell en français. Elle m’a dit qu’il s’agissait de la drépanocytose, et elle m’a dit que c’était pas – c’est une maladie en fait quand tu es – sickle cell - quand tu es anémique vraiment. Mais quant au sickle cell trait il, ne faut pas penser comme une maladie.

Absolument.

Oui. Donc c’est la, ou c’est elle qui m’a avait remonté un peu le moral, parce que j’étais vraiment très abattue.

Oui. Mais si je peux t’interrompre, je peux te poser la question, la première fois c’était avec le premier enfant, mais on t’a simplement dit qu’il y avait quelque chose qui n’était pas normal. Mais est-ce qu’on t’avais expliquer davantage lorsque tu as eu le résultat du sang, ou de la prise de sang qu’on a fait au début?

Non non non. Ils m’ont juste dit que, ‘La prise de sang qu’on t’a fait à montré que tu es sickle cell trait.’ Oui. Donc je, il n’y n’avait pas d’autres informations, ce qui m’a fait beaucoup plus bouleversée, parce que je n’avais rien compris, je ne savais pas ce que c’était.

Donc c’était clair qu’avant que tu avais 25 ans tu ne savais absolument rien.

Je ne savais rien. C’est au moment ou elle m’a parlé de la drépanocytose, que je me suis rappelée parce que j’avais appris ça au college. Là, je me suis rappelée les SS, tout ce que j’avais appris au college, voilà. Et là j’avais compris.

Oui, mais si je peux te poser encore une question. Tu as appris ça au college, ici en Angleterre ou au Congo?

Au Congo.

Ah bon?

Oui, en 3ème.

 

She has a friend with a son with sickle cell anaemia. It's better to separate if both parents are...

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English translation:

If it's possible - I know it's a difficult decision - but if it's possible it's better to separate. That's what I think, to give our children a better life. Because it's painful to see a child, to live with a child, in fact to watch your child suffer every day. Like I was saying about my friend, I see all the time, as soon as the child is there, you have to keep asking, 'Are you feeling ill? What's wrong?' Is it your chest? Is it...?' It's not easy, it's a difficult experience. Sometimes they even have to sleep in separate bedrooms, because one child is ill all the time and his brother is traumatised, his brother can't sleep at night when the other one is crying, so mum and dad have to sleep in separate rooms. Dad sleeps with the older one, and mum sleeps with the one who's ill. It doesn't create harmony, so it's not a good atmosphere in the family. 

So if it's possible, it's better to separate and for everyone to take precautions. That's to say, as soon as you find someone to go out with, you should ask him to get tested before you go any further. If I'd known I was AS [sickle cell carrier] before I got married, I would have made my husband have the test, even before we got married. You need to know.

French original:

Oui. Si c’est possible - je sais que c’est une décision difficile - mais si il est possible, c’est mieux qu’on se sépare, c’est mieux de séparer. Moi c’est ce que je trouve, pour donner une meilleure vie à nos enfants. En fait nous - parce que ça fait de la peine de voir, de vivre avec un enfant, en fait de voir ton enfant souffrir tous les jours. Comme je venais de vous parler de ma copine, je vois tout le temps quand, dès que l’enfant est là il faut lui demander, ‘Est-ce que tu as mal? Qu’est-ce qui fait mal? Est-ce que c’est le chest ? Est-ce que c’est...?’ Ce n’est pas facile, c’est une expérience difficile. Il arrive même des moments où ils se séparent de chambres, parce que comme l’autre enfant est tout le temps malade, et son frère est traumatisé, son frère ne peut pas dormir la nuit quand l’autre pleure, donc papa et maman sont obligés de séparer les chambres. Papa dort avec l’autre, le plus grand, et maman dort avec celui qui est malade. Ça ne fait pas l’harmonie, et puis ce n’est pas une bonne ambience dans la famille. Donc s’il est possible, c’est mieux qu’on se sépare, et que chacun prenne des précautions, c’est-à-dire que, une fois, si tu trouve quelqu’un d’autre il faut lui demander de faire des tests avant d’aller plus loin, pour savoir ce qui vient. Moi si j’avais su que j’étais AS avant de me marier, j’aurais obligé mon mari à faire le tests, avant qu’on se marie même, on allait déjà savoir.
 
 

Now she knows she is a sickle cell carrier she wonders if it makes her anaemic in pregnancy. ...

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English translation:

Has it changed your life?

Yes, it's changed my life because since then it's one more thing I keep thinking about. I keep thinking I'm a carrier of this condition and then when I'm pregnant I'm already thinking about the child who will be born. I'm saying to myself, 'I don't know if he'll be a carrier or not a carrier.' And then on top of that as soon as I feel weak or when I am a bit tired, I'm immediately thinking about anaemia, whereas before I didn't think about it, even if I felt tired it never occurred to me. I keep thinking maybe I am. And that happens a lot, unfortunately, when I'm pregnant I'm often anaemic, so I have to take iron, things like that. 

Footnote' There is no evidence that a mother who is a sickle cell carrier is at increased risk of anaemia in pregnancy.

French original:

Est-ce que ça a changé ta vie?

Oui, ça a changé ma vie parce que depuis là j’ai une idée de plus en ma tête. Je me dis que je suis porteur de cette maladie, et puis quand je suis enceinte je me dis, je pense déjà à l’enfant qui va naître. Je me dis, ‘Je ne sais pas s’il sera porteur ou non porteur.’ Et puis encore dès que j’ai des faiblesses, quand je suis un peu fatiguée, je pense déjà à l’anémie, alors qu’avant je n’avais pas cette idée, même si je sentais la fatigue je n’avais pas cette idée. Je me dis que je suis peut-être. Et ça arrive souvent malheureusement, quand je suis enceinte je suis souvent anémique, donc il faut que je prenne du fer, des choses comme ça.

 

 

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English translation:

I didn't have enough information. Actually the midwives didn't really help me in that respect. It's much more, the woman - I don't want to name her - at the clinic, that's the service which helped me a lot, because they even said, 'If you have any questions, any problems, you can come back any time, that's why we're here.' But the midwives, no. They just, they gave me the forms to do - even when I did it for the first one, they didn't say it was about that, they didn't tell me anything.

If I can ask another question, the first time you went to the clinic when they took the blood test, did they not explain what electrophoresis was?

No. In fact the first time I was pregnant, all the tests I did, HIV, all that, they told me nothing, they just gave me the forms, they said, 'Go and do this', that's all. I didn't know what it was about - it's lucky I could read. I read the forms, I knew it was about this and this and this, but I didn't know 'sickle cell trait', 'sickle cell', what was it? I'd never heard anyone mention this name, so I didn't know what it was about.

But how would you like the system to be improved at the level of information which midwives give to everyone, and certainly to those who are potentially sickle cell carriers?

I'd really like the midwives to take time to explain to their patient, so to speak, what people can expect, for example, 'You'll have this test and this test to do, this is what happens if the tests are positive, this is what you have to do, this is what one could do. If it's negative, here's what could happen.' Then they'd take the blood test and I know what I'm expecting and I'm prepared, I know that I'm doing it for a particular reason, and if it turns out this is the result, I'm going to do this, or things like that. You're better prepared than when they send you the results and you don't know what it's about. I was shocked, really shocked.

French original:

Je n’ai pas eu assez d’informations. En fait, les sages-femmes ne m’ont pas vraiment aidé de ce côté-là. C’est beaucoup plus, la femme – je n’ai pas envie de citer le nom – mais à la clinique, c’est ce service là qui m’a beaucoup aidé, parce qu’ils m’ont dit même que si tu as des questions, des problèmes, tu peux tout le temps revenir, on est là pour ça. Voilà. Mais les sages-femmes, non. Non, ils ont juste, ils m’ont donné les formes pour faire les - quand j’ai fait ça même pour la première fois, ils ne m’ont pas dit qu’il s’agissait de ça, ils ne m’ont rien dit.

Si je peux te poser encore une question. Est-ce que c’était la première fois que tu as été à la clinique lorsqu’on a fait la prise de sang, on ne t’a pas expliqué que c’était l’électrophorèse?

Non. Tout, en fait, la première fois quand j’étais enceinte, tous les tests que j’ai faits, les HIV tout ça, ils ne m’ont rien dit. Ils m’ont juste donné les formes, ils m’ont dit, ‘Va faire ça’, c’est tout. J’allais faire les tests, je ne savais pas de quoi il s’agissait. Bon, moi, heureusement que je savais lire. J’ai lu les formes, je savais qu’il s’agit de ça et ça et ça, mais ‘sickle cell trait’, ‘sickle cell’ je ne savais pas, c’était quoi? Parce que je n’avais jamais entendu parler de ce nom, donc je ne savais pas ce que c’était.

Mais, comment est-ce que tu veux qu’on améliore le système au niveau des informations que les sages-femmes donnent à tout le monde et certainement à ceux qui ont le potentiel d’être porteuses de l’anémie de faucille?

J’aimerais bien que, qu’on puisse, que les sages-femmes puissent prendre leur temps à expliquer à leur, je peux dire, ‘patiente’ ce qu’ils ont à faire face. Par exemple ‘Tu auras tel test et tel test à passer, voilà si les tests sont positifs voilà ce que tu dois faire, voilà ce qu’on pourra faire. Si c’est négatif, voilà comment ça peut se passer.’ Là, au moins, on va faire la prise de sang et je sais à quoi je m’attends et je suis préparée, je sais que je fais ça pour arriver à tel but, et au cas où c’est ceci, je vais faire ceci ou des choses comme ça. On est mieux préparé, que lorsqu’on t’envoie des résultats et que tu ne sais pas de quoi il s’agit. J’étais bouleversée, j’étais vraiment bouleversée.

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