Had you, either of you heard of the condition before?

Father: No. I’ve heard of sickle cell but not actually haemoglobin E. It was all new to us, a bit out of the blue.

So tell me what happened from, from sort of the heel prick [Baby noises]. Did you know what they were testing for when they did the heel prick?

Father: No, not at all, it was something they said everybody was having it done. They said it was a fairly new thing but it had to be done. Obviously you’ve told us that we didn’t have to have it done, but at the time we weren’t led to believe that. We were told it was all part and parcel of it. They did it. The next thing we had a letter from a lady in [city], not even the midwife didn’t know at the time we were told. We had the letter and then obviously we got in touch with the midwife, and then shed heard at the same time.

So nobody actually rang you and talked you through it? It was just a letter?

Father: Just a letter. Yeah, just a letter.

What was that like getting that letter?

Father: It was a bit of a shock, because obviously it said that perhaps if we were both carriers we couldn’t have any more children, or if we did theres more of a risk.

Footnote no-one has to have screening if they do not want to – it is a choice. Being a carrier does not prevent you from having further children, but this couple would not have wanted to try for another baby if they had discovered he was also a carrier of sickle cell or beta thalassaemia. (If both parents are carriers of haemoglobin E, however, there is no risk to the child’s health).

I mean, in the letter that you got, what did it say in the letter can you remember?

It said, ‘Your son has – in his heel prick test, results show that hes got abnormal’ – is it ‘abnormal haemoglobins’? It didn’t say that he was a sickle cell carrier. I just went through the leaflet and whittled it down, and knew it couldn’t be any of the other ones. It could only be sickle cell. And it was case of ‘Whoa!’ Because I mean, I just didn’t expect it. And it said, yeah, ‘Hes trace of haemoglobins – nothing to worry about, your child’s health is fine. We would just like to talk to you about it. But that doesn’t reassure you. It really doesn’t reassure you. It puts a spanner in the works and frightens you, to be honest. It didn’t reassure me at all.

And it said at the bottom of the letter, ‘If you want to ring me, ring me. Well I did. I didn’t wait for her to come and see me. I rang her. I wanted to know there and then. Because like I say, when it comes to my children, I don’t mess about. I want to know, there and then.

Did the letter say she was going to come and see you anyway?

Yeah, it said she was going to come and see me in January and this, that and the other, so. And then so it was a case of I then had to wait for her to come out to see me. But she explained everything to me and I did feel a lot more reassured, a lot more at ease [laughs].

Footnote the word ‘trait’ is sometimes used to describe carrier status. Sometimes it becomes confused with the word ‘trace which can give the wrong impression that it is insignificant.

English translation’

Father: In my case I never knew I had this disease, I was never one to go to the hospital and find out.

So you had never heard about this condition?

Mother: Yes I knew about it

Father: We knew about it through other people…

Mother: He did not use to go to the doctor frequently, so he did not get to know about anything.

Yes, but anyway you don’t have any symptoms of the disease. You are just a carrier…?

Mother: It’s normal.

As a carrier you don’t feel anything and you don’t suffer any symptoms so the majority of people when they have something else to worry about won’t go to the doctor. So it’s normal. So you had heard about this before…?

Father: Yes, I had heard about it. My brother has that problem. I knew, I knew about how to react to this condition and I knew my brother had that problem, and so I never went to hospital to find out and have tests done.

So you only found out that the baby was a carrier after the heel test, wasn’t it? I can well imagine how you must have felt, but can you explain a little bit what your reactions were at the time when you were already having a lot of problems – how was it? Did it make things worse?

Mother: When I heard about it for the first time they used to call it ‘sickle cell disorders’ and I had no Portuguese interpreter, and it was very difficult to find an interpreter, so it was them speaking in English and me trying to understand. When they said that he had a condition I got very startled, I wanted to know more but it was very difficult to understand everything. And they could not manage to explain properly. I don’t know, I got sad and it was difficult for them to explain it to me. They tried to explain and I did not understand, and I was thinking it was something very serious, I did not know what was going to happen to the baby – and every day doing different tests and I got nervous – and I used to cry. ‘What is going on?’ But no, they said, ‘It’s going to be all right. What is strange is that he went to see the result and then they left us alone, didn’t they? It wasn’t, ‘Ah [own name] you have to go to the doctor frequently, you have to do this or that’ – no, nothing.

So in the end you understood that he was a carrier, that he did not have the condition?

Mother: Yes, but in the beginning it was difficult. I did not know what it was and I took some time to understand what it was, but I have been doing everything as I should.

Footnote often people do not realise that being a carrier does not affect your general health and you may have no idea you are a carrier unless you are tested.

Portuguese original’

Father: O meu caso nunca soube que tinha essa do’n’a…nunca fui daqueles de ir ao hospital e saber, saber.

Ent’o nunca tinha ouvido falar da existencia dessa doen’a?

Mother: J’ tinhamos ouvido falar…

Father:

Father: I think it’s always better to have, as you say, have a phone call and have someone talk to you, rather than have a letter, an open letter and think, ‘Oof. What’s this all about?’ Which is, you know, the situation that we found ourselves in for the first, for the first 24 hours, and then waiting for the results and whatever. But the most important thing for us was actually speaking with somebody, and having somebody explain everything to us, you know? So. And maybe with it being more of a foreign, a foreign disease and perhaps it’s with foreign people, it might be easier to have translators. Because my wife didn’t really understand to a great degree, and obviously other people find the same situation. That might be a good thing.

Mm. So they haven’t got any information in Thai?

Father: Hmm. The midwife was very, very good. She went onto a website. I mean, we haven’t [er], were not e-mail or website friendly, but the midwife got us some information off the Internet in Thai, which has helped my wife.

Mother: Mmm.

Father: But weve asked all the way through the pregnancy for translators and interpreters, but obviously [laughs] we never got anything like that, so.

English translation:

Well, it’s simply because of him that I know that I myself am a carrier. Otherwise I would never have known, nor would his father. Even in my family no one knew what sickle cell anaemia was and no one knew what it meant to be a carrier. So it was when they found that my son had the condition, two weeks I think after his birth we had the results and they called us back.

At the time this was happening at the hospital [name of hospital], I think. Because he was born in Paris, and at the time they were the people in Paris who were specialists in sickle cell anaemia. So we went. There was a group which welcomed us and they explained what my son had and how one gets the condition. But all of a sudden like that it’s very hard. Because I’d never heard anybody talking about it before. And it’s serious, because it’s an illness which is really serious. When you have a child born in good health, you look at him like all the other babies and then you realise, ‘My God, hes got this and what are we going to do?’ Of all the ways to try and explain to you that it was hard at that point, as soon as they explained that to me, they showed us a video to explain how it’s inherited through families. And the first day I didn’t see any of it, because I spent my whole time in tears.

French original:

Ben c’est tout simple, c’est grâce à lui que j’ai su que j’étais porteur moi-même, sinon j’ai jamais su, leur papa pareil. Et même au niveau de ma famille personne ne savait ce qu’était la drépanocytose, et personnne ne savait ce que c’était porteur. Donc c’est quand on a détecté la maladie sur mon fils et Рdeux semaines après, je crois, après sa naissance on a eu les résultats.

Et on nous a convoqués. A l’époque ça s’est passé à l’hôpital [name of hospital] je crois, parce qu’il est né à Paris et c’est eux à l’époque à Paris qui sont spécialistes de le drépanocytose. Donc on est parti, il y avait un groupe qui nous a accueilli pour nous expliquer ce que mon fils avait et comment vient la maladie, comment on a ça. Mais sur le coup c’était très dur, parce que je n’avais jamais entendu parler de ça et c’est grave, parce que c’est une maladie qui est très grave. Quand on a un enfant qui naît en bonne santé, on le voit comme tous les autres bébés bien sûr, et puis là on se rend compte, Mon Dieu, il a tout ça, et comment on va faire ?’ De toutes les façons pour vous dire à quel point c’était dur, dès qu’on m’a expliqué ça, on nous a montré une vidéo pour expliquer comment ça se passe avec les familles. Le premier jour je n’ai rien vu parce que j’ai passé mon temps à pleurer.