Interview 18

Age at interview: 40

Brief Outline: First baby diagnosed with sickle cell anaemia after birth. As a Christian, the mother chose not to have prenatal diagnosis in her next pregnancy. The second baby is a carrier. Her third baby is not a carrier. Video and audio clips in French.

Background: Full-time mother, with three children aged 9, 8 and 3. Partner is a driver. Ethnic background/nationality' French African.

More about me...

The couple's first baby was born in Paris where they were living at the time. France had a policy of screening all newborn babies and they found their son had sickle cell anaemia. They had not realised this was being tested for, and it was a shock. Their own results showed they were both sickle cell carriers. For a while they could not talk about it together. They advised other members of their family to be screened and some of them have also turned out to be carriers.

Although they were seen at a specialist hospital in Paris, they were not given much advice about how to look after the baby. The mother found support through other mothers of babies with sickle cell anaemia. In her second pregnancy she did not have any prenatal diagnosis, because as a Catholic she would not have wanted to end the pregnancy anyway, and would rather not feel anxious for the rest of the pregnancy. The second baby was also tested at birth and is a carrier.

The couple then moved to the UK, and had their third baby. The mother was told she needed to have amniocentesis because of her age, to check if the baby had Down's syndrome, even though she would not have terminated the pregnancy if the baby had the condition. She was not aware at the time that the baby was also being tested for sickle cell anaemia, but the results came back negative. After birth it was confirmed that the third child is not a carrier. Although she felt she was not very well informed about her choices for antenatal screening in the UK, she thinks the services for people affected by sickle cell anaemia and levels of awareness amongst health professionals have been outstanding. 

Living with a child with sickle cell anaemia can be difficult at times, and he has had crises since he was 9 months old. It became very difficult for her to manage a full-time or even part-time job. But she loves him very much, and her faith helps and supports her. She feels it is important that people know about sickle cell disorders and talk about it more openly. 

Each person has to make the choice that is right for them about whether they can cope with a child with the condition. One of her friends with a child with sickle cell anaemia is pursuing pre-implantation genetic diagnosis as an alternative to antenatal diagnosis. 

In her second pregnancy, she had no diagnostic tests, because she wouldn't want to end the pregnancy. [La deuxième fois, elle n'a pas eu des tests diagnostiques, parce qu'elle n'aurait pas voulu arrêter la grossesse].

English translation:

With your first one, I don't think you'd do anything. Well, personally I wouldn't have done anything. Because being a carrier and having children, it's a lottery. And I'm living proof of the lottery of sickle cell. Because I've got one child, the first, who has sickle cell anaemia, the second is AS [sickle cell carrier] and the third is AA [not a carrier]. So you can't, you can't, it's true that all of a sudden it's difficult, but I think when you're having your first baby you can't allow yourself to, to take these big decisions. 

It's perhaps after the first, thinking about the second, in the situation where you live with the first child, and then perhaps you begin to ask yourself questions. Because the, the biggest decision, it's when the child is there or when you fall pregnant, and you have the test done to know if the child will be born with sickle cell or not. I think that the hardest thing is the decision to take afterwards. Because when it happens, okay, I'm pregnant, the child's born, he's got it or he hasn't got it. I haven't had to agonise over this decision. But when you know already that he's moving inside you, there's already contact with the mother, and then you find out the child is affected, what kind of decision are you going to make? 

It's really hard because at the same time the child's already there. The first one is ill. I love him very much. And with that one I don't know how it's going to be. And if I'm going to have to take a, a decision, basically that means that I'd have to end the pregnancy. So somebody who takes that decision to end a pregnancy, that's a sense of guilt that's there, that you're, you, you don't risk forgetting that straight away. So I believe it's very very hard. Thank God, I haven't had to take that decision. But I was afraid of it all the time. But for the two first ones, I didn't have to do that. It was when I was here that I think because of, because of my age I did that. But it was very agonising.

Footnote' This mother had one baby with the condition, one who was a carrier and one who was unaffected. However, the 1 in 4 risk of having a baby with the condition remains the same in each pregnancy. Just because a couple already has one child with the condition, this does not mean their next child will be unaffected. Each child could be affected.

French original:

Pour le premier, je crois qu’on ne fait rien. En fait, personnellement je n’aurais rien fait, parce que être porteur et avoir des enfants c’est la lotterie. Et moi je suis la partie même vivante de la lotterie de la drépanocytose, parce que j’ai eu un enfant, le premier qui est SS, le deuxième qui est AS et la troisième qui est AA.  Donc, on peut pas, on peut pas – c’est vrai que sur le coup c’est difficile, mais je crois qu’avec un premier enfant on ne peut pas se permettre de prendre des grandes décisions.  C’est peut-être après le premier ou voir le deuxième, la situation dans laquelle on vit avec le premier et là on se pose des questions, parce que la plus grande décision c’est quand l’enfant est là ou que l’on tombe enceinte, et que l’on fait ce test pour savoir si l’enfant va naître avec la drépanocytose ou pas.  Moi je pense que le plus dur c’est la décision à prendre après.  Parce que quand tu viens – bon, je suis enceinte, il naît, il l’a, il ne l’a pas, j’ai pas eu à me casser la tête. Mais quand on sait déjà qu’il bouge là-dedans, il y a déjà quand-même le contact avec la maman, et après l’enfant il est atteint, qu’est-ce-que vous allez prendre comme décision ?  

C’est dur parce qu’en même temps il est là. C’est le premier qui est malade, je l’aime bien et celui là je ne sais pas comment ça va être, et si je dois prendre une décision donc ça veut dire qu’il faut arrêter la grossesse. Donc qui dit arrêter la grossesse il y a une culpabilité qui est là, qu’on ne risque pas d’oublier tout de suite. Donc je crois que c’est très très dur.  Dieu merci je n’ai pas eu à prendre cette décision, mais j’appréhendais ça toujours. Mais les deux premiers je n’ai pas eu a faire ça. C’est quand je suis ici je crois que par rapport au – c’est plus par rapport à l’âge, j’ai fait ça, mais c’était très angoissant.

 

A friend plans to have preimplantation genetic diagnosis, and has asked God's forgiveness. [Une amie va avoir le diagnostique génétique de préimplantation, et elle a demandé pardon à Dieu].

English translation:

Yes, yes. Very important decisions. But as I said, I was talking from my religious conviction. I have a friend, not to name anyone, but with whom I'm very close, who has a child who has lots of problems with sickle cell. But for her it, it's, she's now reached the point, because that's happening now, where she's going to have in vitro fertilisation. So that they'll be able to see before they implant the embryos if any of them are ill or not. Yes, she's got to that point. She says, '[Own name], I've asked God's pardon and I'm going ahead with it.' She says, 'With the one that I have, I can't do it any more. And I don't have the courage, I wouldn't have the strength to cope with a second one.' It's personal. But everything comes down to information, and with information you can find solutions.

French original:

Ah oui. Oui, oui, des décisions très importantes.  Mais bon, comme je disais, moi je parlais de ma conviction religieuse. J’ai eu une copine - pour ne pas citer les gens - mais avec qui je suis très proche, qui a un enfant qui a beaucoup de problèmes aussi de drépano. Mais elle, c’est systématique, elle est partie à un point maintenant - parce que ça se fait maintenant - où on fait l’insémination In-Vitro et qu’on peut déjà voir avant d’inséminer si l’enfant va être malade ou pas. Oui, oui. Elle en est arrivé là. Elle dit, ‘ [own name], j’ai demandé pardon à Dieu, et je continue.’ Elle dit, ‘Avec une que j’ai, je n’en peux plus et je n’aurais pas le courage, je n’aurais pas la force de supporter un deuxième.’ C’est personnel.  Mais tout est au niveau de l’information, et que avec l’information on arrive à trouver des solutions.
 

She was so upset she couldn't see the information video about sickle cell anaemia through her...

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, he's 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 - deux 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.

 

They found it hard to talk to each other when the baby was diagnosed. They each felt guilty and...

English translation:

Yes. Life changes straight away, even between the two partners, because you feel guilty. You have the impression that it's because of you that this child is ill. And that's very hard. And that's hard because to start off with you don't talk about it. That was certainly our case. We each stayed in our corner and thought about it, 'What have I done? Should I have kept him? I didn't know. Is it my fault?' And he was exactly the same, must have been saying the same things to himself. And straight away that brings tensions between the couple. But you don't express that because you're afraid of hurting the other person. And we, in our case at the start we really couldn't find a means of communication. So it was each one for themselves. We suffered in silence. 

And at the same time we loved - there was this child who was there that we loved a lot. But personally we were suffering, because - especially when he started having his first crisis, which he had at 9 months, which is early. So all of a sudden then we were really confronted by the illness, and we were more focused on the child. You forget yourself because you want to give everything you can to the child. So we forgot about ourselves. And then it was a lack of communication and that created lots of tensions. That's on the family side, between the mother and father. 

At the level of other close family, it was more pity, and we didn't need that. 'Oh, it's hard. Oh, the poor things. The poor little child'. You hear that once, twice and afterwards, well, okay, you try not to talk about it to people around you. So for a second time you close in on yourself. 

French original:

Oui. La vie, elle change déjà entre les deux partenaires, parce qu’on se sent coupable.  On a l’impression que c’est à cause de nous que cet enfant est malade, et ça c’est dur.  Et ça c’est dur parce qu’au départ on n’en parle pas.  Nous, ça a été notre cas, chacun reste dans son coin et on cogite.  ‘Qu’est-ce-que jai fait ? Est-ce-que j’aurais du le garder ? Et on ne savait pas, et c’est ma faute.’ L’autre aussi pareil, devait se dire pareil. Et du coup ça amène des tensions dans un couple, mais on ne s’exprime pas parce qu’on a peur de blesser l’autre. Et nous, dans notre cas au départ on n’a vraiment pas trouvé un ton de communication. Donc c’était chacun pour soi, on souffrait dans le silence. Et en même temps, on aimait, il y avait cet enfant qui était là qu’on aimait beaucoup mais personnellement on souffrait, parce que surtout quand il a commencé à avoir sa première crise, qu’il a eu a neuf mois quand-même, ce qui fait tôt, alors du coup là on était vraiment confronté à la maladie, et on était plus focalisé sur l’enfant. On s’oublie, parce qu’on veut donner le maximum à l’enfant. Nous-même on s’oublie, et après c’était un manque de communication, et ça fait beaucoup de tensions -  ça c’est du côté familial, entre le père et la maman.  

Au niveau de la famille proche, c’est plus de la pitié et on n’a pas besoin de ça.  ‘Ah c’est dur, ah, les pauvres, le pauvre petit.’ On entend ça une fois, deux fois, et après bon ben on essaie de ne pas en parler autour de soi, donc encore une deuxième fois on encaisse pour soi.

 

Awareness is vital. Parents who believe a child with sickle cell will die won't seek help. [La...

English translation:

Well, I think they ought to give you a bit more information from a young age, as I say, from a young age or even at school. At school you could start distributing leaflets or - I've forgotten the name. 

Pamphlets?

Yes. Pamphlets which give you a general idea, a little bit of knowledge. And then afterwards, details. They can say to you afterwards, 'You can read this book or you can go to this place to find information.' But from school onwards, because when you're at school that's when you start to have feelings, to have a boyfriend or girlfriend, and then that gives you some idea. And after school, when you go on to college, it's the same, they should reinforce that information. Because I know that if I hadn't had this child, maybe even up to this day I wouldn't know what sickle cell is. And similarly with this child, we've informed the people around us, our close family and then friends. And even up till now it's sometimes happened to me that I have to inform certain people what sickle cell is. Because people just don't know.

Do you think there is enough information for example on Internet sites?

Now, yes, here in England - in France there are still gaps. In France there are definitely still gaps. Like we thought at the start that it was something that really only affected a small minority. And even worse, in our community, when someone has it, the child is almost neglected, it must be said. Especially in Africa, they just don't think about the child. 'It's sickle cell, and if it's sickle cell that means that the child won't have a long life. So why take any interest in the child? It's true, information needs to be there, and as far as information is concerned I think, thank goodness, people are starting to have videos and all of that. But there's still a lot of work to be done at the source. And by the source I mean Africa, yes.

French original:

Moi, je crois qu’il faut donner un peu plus d’information, dès le bas-âge, comme je dis, dès le bas-âge ou même au collège.  Au collège on peut déjà commencer à distribuer des petits livrets ou – j’oublie le nom – des leaflets. 

Des pamphlets, oui.

Des pamphlets, où on parle, on donne une idée générale, une petite connaissance, et après les details, on peut vous dire après, ‘Vous pouvez lire tel livre ou vous pouvez aller a tel endroit pour avoir..’ Mais dès le collège, parce que quand on est au collège c’est là qu’on commence à avoir des petits sentiments, à avoir un petit copain, une petite copine, donc et ça nous donne une idée. Et après le collège quand on va au lycée est la même, on devrait encore renforcer l’information.  Parce que moi je sais que si je n’avais pas eu cet enfant, peut-être jusqu’aujourd’hui je ne saurais pas ce que c’est la drépanocytose. Et la même avec cet enfant on a informé les gens autour de nous, notre famille proche et puis les amis. Et jusqu’aujourd’hui il m’arrive encore d’informer certaines personnes ce que c’est la drépanocytose, parce que les gens ne savent pas.

Est-ce-que tu crois qu’il y a suffisamment d’informations par exemple sur les sites internet ?

Maintenant oui, ici en Angleterre - en France on a encore des lacunes. En France on a encore des lacunes.  Comme au départ on pensait que ça ne touchait qu’une petite minorité, et le pire en plus dans notre communauté quand on a ça, l’enfant est presque négligé, il faut le dire, surtout en Afrique. On ne considère pas l’enfant. ‘C’est la drépanocytose.’ Qui dit drépanocytose ça veut dire que l’enfant n’a pas longue vie, donc pourquoi s’intéresser à l’enfant ?  C’est vrai que l’information doit être là et pour en revenir à l’information je crois que, Dieu merci, on commence à avoir les vidéos et tout ça, mais on a beaucoup de travail à faire à la source.  Qui dit la source c’est-à-dire en Afrique. Oui.

Her 9-year-old son with sickle cell anaemia has been in intensive care with respiratory problems....

English translation:

Personally I think that here they're already doing very well. And, because we know that sickle cell varies from child to child and there are misleading symptoms. Because there are some children who are very slender, very thin, like mine, and then there are others who are quite hefty, quite beefy, and you think they're in perfect health. And of course that's not the case.

Suddenly a crisis?

Crisis is part of it, because crisis, you can recognise it. It's in their limbs. But I know with my child, for example, that he's developed cardiac problems. And every time he has a crisis, sometimes there are problems of infections in his lungs. And it's not easy. And when you're talking about infections in the lungs, then sometimes there'll be respiratory problems and he'll find himself in Intensive Care. Last time he was there, last month, there was another infant, another child next to him. And they ended up playing together. But when they came out they both had slightly different problems. He even had a, a small problem with his brain. And when you see them, people say, 'Oh, they come here. They'll leave a week later. It's not that serious'. But it is serious. It's a problem which is very serious, both for the parents and for everybody around them. But in general I think that here in England the staff have started to be really well trained for that and they put everyone at their ease. I think that's the most important thing. Put the parents at their ease and the child at his ease and then the rest will follow.

French original:

Moi, je pense, déjà ici ils le font assez très bien, et que comme on sait la drépanocytose ça varie d’un enfant à l’autre, et ils ont des signes très trompeurs, les enfants, parce qu’il y en a qui sont fins, maigrichons comme le mien, et d’autres qui sont très costauds, balèzes, on pense qu’ils sont en pleine forme, et puis ce n’est pas le cas.

D’un coup la crise.

La crise est dedans, parce que il y a la crise comme on connait par, c’est les membres, mais je sais que le mien, par exemple, il a developpé des problèmes cardiaques, et à chaque fois qu’il a une crise parfois c’est des problèmes d’infections, des poumons. Et c’est pas facile. Qui dit infection des poumons donc parfois qu’il a des problèmes respiratoires et se retrouve en soins intensifs.  La dernière fois qu’il y était le mois dernier, il y avait un enfant qui était à côté de lui, à la fin ils jouaient ensemble mais quand ils sont tous rentrés chacun avait des problèmes différents, lui on avait même détecté un petit problème du cerveau.  Et quand on les voit, on se dit, ‘Oh, ils viennent là, ils vont sortir une semaine après, c’est pas grave.’ Mais c’est très très grave.  C’est un problème qui est très grave, et pour les parents et pour l’entourage, donc. Mais en gros je pense qu’ici en Angleterre le personnel a commencé à être, par commence est très formé pour ça, et met tout le monde à l’aise, quoi. Je crois que le plus important c’est ça, mettre les parents à l’aise et l’enfant à l’aise, et après le reste se fait tout seul.

 

Sickle cell can be managed. She tells friends what to do, so her son can have a normal social...

English translation:

Well, you have to try to banish fear. In fact people are afraid because it's in our mentality, in that people aren't made aware that sickle cell is a long-term illness and that it's not, it can't be cured but at the same time it can be treated, and that you can live a long time with it these days. And you can say that it's an illness like any other, even if it manifests itself in several different ways. But not to take it as an isolated illness, but to take it as an illness like any other illness and which can be managed in our society. Because in fact in singling out this illness or isolating the families, you isolate everyone. And I think that it all comes down to that. So isolation, fear and then pity. And none of that helps. It's an illness. You just have to face it. There are things you have to do every day. There are medications to take every day. So you have to be careful. 

At the level of the family and all the people around the family, whether that's in-laws, friends, everybody has to know what kind of treatment the baby has to take, the child has to take. So I take great care when they're going to my friends or they're going to spend a day there. '[Son] has a big bottle. So please make sure he, he finishes the bottle. And if he finishes it, please fill it up again for him'. So everybody, it, it's so that everybody feels responsible. And that doesn't prevent him, just because he has this bottle, that he can't, that doesn't prevent him from playing with others. It doesn't mean he can't go and sleep over at other people's. Because often I know that in Paris, even we at the start with this lack of information, we used to say to ourselves, 'Oh, he'll never be able to sleep over at other people's houses. We'll never be able to leave him with our family. We'll never be able to leave him with friends, even to look after him for a bit. We'll never be able to have a babysitter'. So in fact then you find yourself enclosed in your circle, in one room. And then that's it.

Footnote' Sickle cell anaemia can be cured by a bone marrow transplant, but this is restricted to a very few people who have an unaffected sibling and whose bone marrow provides a perfect match for donation. In England this procedure is restricted to individuals under the age of 16.

French original:

En fait, essayer de faire partir la crainte.  En fait les gens, ils ont peur parce que c’est dans notre mentalité.  Tant que on ne fait pas comprendre aux gens que la drépanocytose c’est une maladie à long terme et que elle n’est pas, elle ne se guérit pas, mais en même temps on la traite, et qu’on peut vivre longtemps avec maintenant. Et on peut dire que c’est une maladie comme une autre, même si elle se manifeste de plusieurs façons, mais de ne pas la prendre comme une maladie isolée, mais de la prendre comme une maladie comme toute autre maladie et que ça se gère dans notre société. Parce que en fait si, en fait en isolant même la maladie, bien, on isole les familles, on isole tout le monde. Et je crois que tout ça vient de là, donc de l’isolement, la crainte et puis la pitié, et tout ça ça ne règle rien.  C’est une maladie, on fait face.  Il y a des choses à faire tous les jours, il a des médicaments à prendre tous les jours, donc on fait très attention.  Au niveau de la famille, que tout le monde autour de la famille, que ce soit la belle-famille, les amis, tout le monde doit savoir quel genre de traitement l’enfant doit prendre. Comme ça je fais même attention quand ils vont chez mes amis, ils vont passer des journées là-bas. ‘[son’s name] a une grande bouteille, donc faites attention qu’il finisse la bouteille et s’il la finit, vous la remplissez encore.’ Donc tout le monde, pour que tout le monde se sente responsable, et ça n’empêche pas parce qu’il a cette bouteille qu’il ne peut pas jouer avec les autres, qu’il ne peut pas aller dormir chez les gens, parce que souvent moi je sais qu’à Paris, même déjà même nous-même au départ avec ce manque d’information, on s’est dit, ‘Mais jamais il ne pourra aller dormir chez des gens, jamais on pourra le laisser dans la famille, jamais on ne pourra le laisser avec des amis, même pour le faire garder, même pour prendre une nounou.’ En fait après on se retrouve fermé dans un cercle, dans une pièce et puis voilà, quoi.

It was hard to combine work with caring for her son. Eventually she stopped working. [C''tait...

English translation:

And then there's your professional life, because you can't predict when crises are going to happen. At the start you're, well, certainly I was very involved in my work, I had responsibilities. And little by little I started to take on fewer responsibilities, especially when he started at nursery school. As soon as he had some little thing wrong with him, they called me, I had to be there. Because the school doesn't take any responsibility, because it's not a parent. And it's always mum who has to leave work, who's nearest . And so it's always mum who had to keep missing work, and gradually, at work they didn't say, 'You're no good to us any more'. But at the same time I understand how others feel. They need someone who can be available a hundred per cent. And because they couldn't count on you, then they started giving you fewer responsibilities. You do what you can, but at the same time that's it. And so those were the three things which transformed my life. And in the end I was practically obliged to stop working. I went from full-time to part-time, and then after part-time there was nothing at all. And that's it.

French original:

Et après vient la vie professionnelle, parce que les crises ça ne prévient pas. Au départ on est très bien - surtout moi - j’étais très bien impliquée dans mon travail, j’avais des responsabilités, au fur et à mesure j’ai commencé à avoir mes responsabilités se  dégrader, surtout quand il a commencé la maternelle. Dès qu’il avait un petit mal on m’appelle, il faut être là, parce que l’école ne prend aucune responsabilité tant qu’il n’y a pas un parent, et comme c’est la maman qui est toujours partante, qui est plus proche, et ben c’est maman qui quittait tout le temps le boulot, au fur et à mesure après, au boulot on ne te dit pas, ‘Tu ne sers plus à rien’, mais en même temps je comprends les autres. Ils ont besoin de quelqu’un qui doit être disponible à 100% et comme on ne peut pas compter sur toi, bien on ne te donne plus trop de responsabilités.   Tu fais ce que tu peux et puis en même temps sans plus. Et là ça a été ces trois choses qui ont transformées ma vie. Et à la fin ben j’étais presque obligée d’arrêter le travail.  Je suis passée de temps plein à temps partiel, et puis après le temps partiel il n’y a plus rien du tout, voilà.
 

Professional learning: Caring for her son with sickle cell anaemia is a cross she bears, and she...

English translation:

That's a question I'd like to ask if it's OK with you. You have religious conviction. And what part did religion play or does religion play for you in sustaining you in your situation? Because you give me the impression that you're managing this situation well. Does religion play a role?

It plays an enormous role. Because I start from the principle that in life everyone has their crosses to bear. And for me, my first son, I've taken him up as my cross, which can be heavy sometimes. But at the same time it's light, because I love him. And in the life that I travel with him, I can see the life of Christ, and that helps to lighten my burden. And even when I go to hospital and especially when he has really, really bad crises, I know last time when I was there, the doctors were all there and they looked at me, given the child's condition, because for ten days he'd been on morphine and he wasn't eating hardly at all. It was very hard. And there's me, I arrive, I was there - yes, I pray with him but I always try to - not I try to - I play with him. I've always got a smile on my face. And one of the doctors said to me, “But how do you manage this, to always be smiling and always look as if nothing's wrong?” I said, “No. It's not because there's nothing wrong. I know there is something serious wrong. But at the same time because I know there's somebody else who's giving me the strength to bear it, and that I don't need to worry myself very much about it, that's it.”

French original:

Et c’est une question que je voulais te poser si c’est okay avec toi.  Tu as une conviction religieuse, et quelle part que la religion joue pour te maintenir dans la situation que tu es ? Parce que tu me donnes l’impression que tu gères cette situation bien.  Est-ce-que la religion joue un rôle ?

Enormément, parce qu’on part du principe, dans la vie on a chacun nos croix, et moi mon premier fils je l’ai pris comme ma croix, et qui peut être lourde parfois, mais en même temps je le gère parce que je l’aime, et la vie que je traverse avec lui je vois la vie du Christ, et ça m’aide à alléger mon fardeau.  Et même quand je vais à l’hôpital, et surtout quand il a des crises très très dures, je sais que là dernièrement on était même ici, les docteurs étaient là, elles me regardent vu l’état de l’enfant, parce que pendant plus de dix jours il était sous morphine, il ne mangeait pratiquement pas, c’était très dur. Et moi j’arrive, j’étais là, oui je prie avec lui, mais j’essaie toujours de - pas j’essaie, je joue toujours avec lui, j’ai toujours le sourire, et il y a même une des docteurs qui me dit, ‘Mais comment vous faites d’avoir toujours le sourire et puis d’être toujours là comme si de rien n’etait ?’  Je dis, ‘Non, c’est pas parce que de rien n’etait. Je sais qu’il y a quelque chose de grave, mais en même temps parce que je sais qu’il y a quelqu’un aussi qui me donne cette force de supporter ça, et je n’ai pas à m’inquiéter enormément, voilà.’

 

In Africa sickle cell has sometimes been seen wrongly as a curse brought to the family by one...

English translation:

There is one thing I forgot to say in fact at the start, which is very important, in the video cassette which they gave us to watch at the beginning. And it was focused on African society, and you really saw what happens in the African context. People just don't talk about it. And on the tape they explained even that there are some couples who just separated. The husband sent his wife away, because for him it was the woman who had brought this curse into the family and made the children sick. And that was like, 'Ooh' I said, 'Right, okay'.

French original:

Il y a un truc que j’ai oublié de dire en fait au début qui est très important dans la cassette qu’on nous avait donné à regarder au départ, et là c’était focalisé sur la société africaine et on voyait vraiment comment ça se passe dans le milieu africain. Les gens n’en parlent pas, et sur la cassette on expliquait même des couples qui se sont carrément séparés, le mari qui a renvoyé sa femme parce que pour lui c’était cette femme qui a amené la malédiction dans sa famille et les enfants étaient malades. Et ça c’était, ‘Ooh,’ j’ai dis, ‘Bon, d’accord.’  
 

Professional learning: It was hard to support each other. She did not want her family's pity. [Ils l'ont trouvé difficile de se donner le soutien mutuel. Elle n'a pas voulu la pitié de sa famille].

English translation:

Yes. Life changes straight away, even between the two partners, because you feel guilty. You have the impression that it's because of you that this child is ill. And that's very hard. And that's hard because to start off with you don't talk about it. That was certainly our case. We each stayed in our corner and thought about it, 'What have I done? Should I have kept him? I didn't know. Is it my fault?' And he was exactly the same, must have been saying the same things to himself. And straight away that brings tensions between the couple. But you don't express that because you're afraid of hurting the other person. And we, in our case at the start we really couldn't find a means of communication. So it was each one for themselves. We suffered in silence. And at the same time we loved, there was this child who was there that we loved a lot. But personally we were suffering, because, especially when he started having his first crisis, which he had at 9 months, which is early. So all of a sudden then we were really confronted by the illness, and we were more focused on the child. You forget yourself because you want to give everything you can to the child. So we forgot about ourselves. And then it was a lack of communication and that created lots of tensions. That's on the family side, between the mother and father. 

At the level of other close family, it was more pity, and we didn't need that. 'Oh, it's hard. Oh, the poor things. The poor little child'. You hear that once, twice and afterwards, well, okay, you try not to talk about it to people around you. So for a second time you close in on yourself. 

French original:

Oui. La vie, elle change déjà entre les deux partenaires, parce qu’on se sent coupable.  On a l’impression que c’est à cause de nous que cet enfant est malade, et ça c’est dur.  Et ça c’est dur parce qu’au départ on n’en parle pas.  Nous, ça a été notre cas, chacun reste dans son coin et on cogite.  ‘Qu’est-ce-que jai fait ? Est-ce-que j’aurais du le garder ? Et on ne savait pas, et c’est ma faute.’ L’autre aussi pareil, devait se dire pareil. Et du coup ça amène des tensions dans un couple, mais on ne s’exprime pas parce qu’on a peur de blesser l’autre. Et nous, dans notre cas au départ on n’a vraiment pas trouvé un ton de communication. Donc c’était chacun pour soi, on souffrait dans le silence. Et en même temps, on aimait, il y avait cet enfant qui était là qu’on aimait beaucoup mais personnellement on souffrait, parce que surtout quand il a commencé à avoir sa première crise, qu’il a eu a neuf mois quand-même, ce qui fait tôt, alors du coup là on était vraiment confronté à la maladie, et on était plus focalisé sur l’enfant. On s’oublie, parce qu’on veut donner le maximum à l’enfant. Nous-même on s’oublie, et après c’était un manque de communication, et ça fait beaucoup de tensions -  ça c’est du côté familial, entre le père et la maman.  

Au niveau de la famille proche, c’est plus de la pitié et on n’a pas besoin de ça.  ‘Ah c’est dur, ah, les pauvres, le pauvre petit.’ On entend ça une fois, deux fois, et après bon ben on essaie de ne pas en parler autour de soi, donc encore une deuxième fois on encaisse pour soi. 

 

Professional learning: The support from local counsellors and support groups has been outstanding...

English translation: 

And coming back to England, what do you think of the support which exists or doesn't exist at the hospital?

No, I think here they're, how shall I say it? not a hundred per cent but they're at the very top. I can't find the word. Because I was so looked after myself. At the start it was just you, the mother, and you, you do everything to protect the child. All your attention is for the child alone. But since I came here I've learnt that we too, we mothers need attention. And there is some really extraordinary work going on here. For instance, by the Sickle Cell Society. And it's really splendid. It brings tears to my eyes, because the people are so good.

French original:

Et retournons ici en Angleterre, comment est-ce-que tu as vu le support qui existe, ou qui n’existe pas dans ce cas, à l’hôpital ?

Non, je crois qu’ici, ils sont, comment dire, pas 100% mais ils sont au top.  Je ne trouve pas le mot, parce que j’ai été tellement pouponnée moi-même.  Au départ c’étais juste toi la maman qui fait tout pour protéger l’enfant, pour - toute ton attention n’est que sur ton enfant. Mais depuis que je suis venue ici, j’ai appris que nous aussi les mamans on avait besoin d’attention. Et ça il y a un travail extraordinaire qui se fait ici par rapport à la Sickle Cell Society, et vraiment c’est grandiose, ça me donne même les larmes aux yeux parce que les gens sont très bien.