MotherWeve – at the time, I suppose everybody that we were, that wed seen and spoke to about it knew about it anyway. But it’s never, it hasnt come up since. It’s, my one question was that, Have I, do I need to tell people about this? Do – if I’m ever ill or poorly – do I need to tell anyone if shes ever ill or poorly? And it’s No because it makes it, it’s not that sort of – because you’re only a carrier, you’re just carrying a few of the oddly shaped blood cells round that together can cause the disease if mixed with someone else that’s a carrier, that’s it. As black and white as that. That’s what it is, and I think that’s how we think of it. And it’s never ever brought up, it’s just never mentioned. Because shes had colds and chest infections since and theyre more important than being a sickle cell carrier. If we don’t need to notify people, we don’t need to tell anybody, and it’s not going to cause any illness or make any illness worse, then, no, it’s just something that will just sort of sit in the background, up until either we decided to extend the family or were waiting for grandchildren. [laugh] And I think that’s the only times that it will come up.

Footnote generally a person’s health is not affected by being a sickle cell carrier. There is a risk to carriers of "sickling" under situations of very severe oxygen deprivation. The situation that people are most likely to encounter is oxygen deprivation during anaesthesia. It is therefore useful to have a card to show to health professionals stating that the person is a carrier (for example if emergency surgery is required).

Motherdon’t drop a letter in the post as first contact. I know you’re a number really to the NHS, because they don’t know individual cases. But that was, that was too much shock, a) because you think theres something wrong with your child. And you mention blood and you get panicky. It’s not like a, Well, we think your baby’s got a blocked ear. And especially with her having jaundice as well, it was a bit of a shock. And then theres, there must be something better than highlighting a leaflet. I appreciate that – I mean we were very, very well looked after, very well looked after-

FatherMm, yeah.

Mother- with everything that had gone on, and I do appreciate hospitals are busy and understaffed. And admin departments are all the same in every company, every office, really. But I don’t think as a first point of contact about something that not everybody does know about, whether they are of black origin or not, they might not necessarily know about it, but that was a bad point of contact. I would, it would have been easier if perhaps an appointment had been made through out doctor’s.

Do you think you would still have had the same sort of worry, though? Or what, I mean if somebody had said, Weve made an appointment at your doctor’s but were not telling you what it’s for perhaps that would have been even more…?

MotherOh, no, I think if – no. I think if wed have had, if wed have been told still, Your baby has abnormal haemoglobins a little bit more of a description. Because all there was on this leaflet was a small paragraph about sickle cell.

FatherIf you got somebody on the, if you was one-one on the phone and somebody was to turn around and tell you, they could reassure you on the phone and say, Look, you know, theres nothing to worry about. But all we got was the highlighted, and of course panicking, especially with the wifes work colleague. The first thing that races through your head is, you know, Weve got a small child here who could be in hospital in three months for a, you know, a change of blood. Or she could be in – you know, we didnt know how serious an ailment – if an ailment – shed got, and for somebody, you know, at least you could get reassurance down the phone.

MotherIt could have been the receptionist at the doctor’s that phoned to make the appointment and to say, Weve had your baby’s heel prick test back. There is some abnormalities with it. We cant be a hundred per cent sure on what they are yet, but theyre looking to be sickle cell. They could have asked an – I don’t know if you can, but they could have asked an ethnic question. And sort of, I don’t know, if theyd have, if somebody had have tried to put your mind at rest, We don’t know if. . . I think if – I would, I don’t know the percentages, but I would say it’s more likely if they know that the mum and dad at that time are white, it’s very, very, very unlikely that the baby is, has got the disease. So perhaps a nurse at the – or perhaps even your own doctor, I don’t know. I know everybody is busy but I think if theyd have, wed have had that rather than just a letter and a leaflet dropped through the door and waiting for somebody to phone us.

Footnote only trained health care professionals should give results.

MotherAnd then like I say a letter come through. And we thought it was wrong, to begin with. And because she was a big baby as well we did take it to the hospital, didnt we? We had to take her back to the hospital for a heart murmur. And we did take it back, didnt we? We had that leaflet with us in our red book [laughs]. And we said, Look, you know, is this right? You know, were being told, weve received this. I think it was a health – was it a health visitor actually?

FatherWhat, with the…

MotherI think it was the health visitor. We were just showing her the leaflet and said, Look, weve had that through. But can she really have this? And it was just waiting for the appointment – well, no, actually, waiting for the date to come around for her, the lady to come out and do the bloods. I’m sure at clinic I took the leaflet down and asked the health visitor, and unfortunately shes just, she was just – we did actually, yeah. She just said, Like you, I cant answer that.

So do you think she didnt know that much about the condition? Was that the issue?

MotherI think she was a bit more shocked, again, because of us being white.

FatherIt was as if, I don’t think maybe she hadnt come across a case of two parents, two white parents having this sickle cell running in the family. Maybe it was just a shock to her.

MotherWe knew nothing about it. We knew nothing about any, certainly not any sickle cell. We were in hospital, the baby had the heel prick, and that was it. And then it was probably, what would it have been, four weeks?

FatherFour or five weeks after.

MotherFour or five weeks later, we get a leaflet and a letter through the post, don’t we, telling us that the baby’s got abnormal blood cells.

FatherHaemoglobin something.

MotherYeah, abnormal haemoglobins, and that we had to go and take her back and have another heel prick test done. And with this leaflet was sickle cell. In my mind predominantly it is not our ethnic background. And plus your baby’s five weeks old. We didnt know anything about it. And I don’t think anybody would have pointed out the fact that she could be suffering, she could be a carrier of sickle cell, because of us being white.

Had you heard about the condition before then?

MotherI knew about the condition, yeah. There was a work colleague that had sickle cell. So it frightened me, and as soon as Id sort of come to terms with the fact that there was something wrong with, with the baby, and I knew how ill this work colleague had got through it. And I didnt know whether she had it, whether – we didnt know what it was. I mean, I think it was, it did say carrier.

FatherWe did hope to start with that it was just a mix-up on the tests, didnt we?

MotherYeah. It just, it could have been that. But we, I knew, the gentleman at work, I knew how poorly he was with it. Blood transfusions and… As soon as Id realised, I thought, oh, everything was racing straight through your head. So it was panic then. I think it was something like two weeks, wasnt it, that we had to go back. Oh, no, sorry, we didnt have to go back, did we?

FatherNo, the lady came here.

MotherThere was, we had to make an appointment for the lady to come here and test – test us, rather than retest the baby, to test us.

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.

FatherThat’s the bit that worried me, because Id never – Id heard the term sickle cell but I had no idea what it involved and, you know, what sort of effects it has on a person. And then when my wife says about the fellow at work and, you know, the scenario he goes through, I just panicked that that’s how-

MotherWed have to bring –

Father-every six, twelve months, littlun would have to go through all that. I wasnt ready for that. But then when we was informed that shes just got the traits of a carrier and shes not going to have it, shes not going to come down with sickle cell.

MotherI think the immediate thing was we knew that she was okay, but.

Did she, when she came to do the testing, before you got the results, did she explain about how the condition is inherited from the, the two parents?

MotherYes. That’s what, that’s what made it, it clear. We understood that one of us had got bad blood, as such, and one of us had got good blood. And that’s how wed mixed and passed it down. So we knew. Just, it was four or five little people, wasnt it, drawn on this flipchart. And looking at that, you could see how we could both pass good or we could both pass – and that really, as simple as it was, made sense. Because you’re looking, you’re looking at someone that is talking to you, but not really a lot in English [laughs]. I mean, you see something like that and you go, Okay. So that’s made sense now. I’m not thick, but I don’t quite understand what you’re saying. And the panic’s still whirring round in your mind, thinking, Well, what’s going to happen? But that did make sense. So we knew that one of us, one of us had got it.

Footnote the term bad blood would not normally be used to describe carrier status. The person who is a carrier has normal blood and is healthy. 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. The word trait is sometimes used to describe carrier status.

FatherNow that we know that littlun’s got, well, is classed as a carrier or shes got a trait in her, then I’m glad that we know now because —

MotherOf her future.

Father- in future it’s something to sit down and just go through it and warn, just in case theres complications when she has children herself. Just in case theres, you know, theres a health risk there to future grandchildren. I’m glad. You know, I’m happy that we knew now. It was a shock, and it was quite stressful to know at the beginning, because with your children you go through the worst, don’t you, thinking, you know, anything. Children get a cold and you worry.

MotherTo be honest, the most stressful thing about that was the in-between. It was the sheer panic in my eyes of looking at my husband going, ‘she is yours. She is yours. There is, you know, theres – because of, I knew sickle cell being mainly in the black community. And I don’t know, he could have thought that Id been dishonest [laugh]. I mean you —

FatherWe did speak about this.

MotherYeah. You do look, you do look at the baby and you know that she is both of ours. But no, there could have been, if he wasnt as understanding, if he wasnt as good a man as what he is, then I dread to think. That’s the only thing. That’s the only thing that went through my head to begin with was, I know you. I know you trust me. I trust you. I havent got to panic about this. But it’s human nature.

MotherAnd I knew that Id got a good marriage and a good husband. But what did keep going through my mind was, What if, what if? I could have been black and blue by now and out that door with a newborn baby, nowhere to go. You sort of – I know your mind spirals, but it could easily happen.

FatherYou read it every day, don’t you?

MotherWeve – at the time, I suppose everybody that we were, that wed seen and spoke to about it knew about it anyway. But it’s never, it hasnt come up since. It’s, my one question was that, Have I, do I need to tell people about this? Do – if I’m ever ill or poorly – do I need to tell anyone if shes ever ill or poorly? And it’s No because it makes it, it’s not that sort of – because you’re only a carrier, you’re just carrying a few of the oddly shaped blood cells round that together can cause the disease if mixed with someone else that’s a carrier, that’s it. As black and white as that.

That’s what it is, and I think that’s how we think of it. And it’s never ever brought up, it’s just never mentioned. Because shes had colds and chest infections since and theyre more important than being a sickle cell carrier. If we don’t need to notify people, we don’t need to tell anybody, and it’s not going to cause any illness or make any illness worse, then, no, it’s just something that will just sort of sit in the background, up until either we decided to extend the family or were waiting for grandchildren [laugh]. And I think that’s the only times that it will come up.

Footnote generally a person’s health is not affected by being a sickle cell carrier. There is a risk to carriers of "sickling" under situations of very severe oxygen deprivation. The situation that people are most likely to encounter is oxygen deprivation during anaesthesia. It is therefore useful to have a card to show to health professionals stating that the person is a carrier (for example if emergency surgery is required).

Going back to sort of the heel prick, and what you understood about what they were testing, I mean, what information did they give you about the heel prick? [dog scratching] Can you remember much about what you had?

MotherNo. Because we didnt have really too good a time in hospital after.

FatherNo, because you had a rough time, didnt you?

MotherSo it was all, it was all a bit of a . . .

FatherWe just took it that that was just part of the normal having a newborn baby. That, you know, that was just a treatment they do as a standard.

MotherSo they —

FatherThey take bloods, do the tests. And then while they were doing that we were more concentrating to get, get the wife —

MotherBut she had quite a few, she had a couple of heel pricks because she was jaundiced. So they needed to, I knew that it was, it’s, they were looking for the – is it the clotting? She had two or three, didnt she? She had the normal one for the testing, and they kept coming back because she was jaundiced and she was [laugh]

And you, did you have a rough birth then?

MotherYes [laughs].

Right. So your mind is on other things completely than the detail of what medical tests are being carried out?

MotherYes. Well, yeah, I mean wanting to tend to her, and I ended up having an emergency caesarean. So the shock of having to have that, not being able to move for a couple of days after, the baby being jaundiced, picking up an infection, having high blood pressure, and then finding a heart murmur in her wasnt really a [laugh] very first good week.

FatherWithin the first three days or something, wasnt it?

MotherSo we didnt, it was all a bit of a blur. The sort of, it was a shock when the letter come through the post. Because I think it was just one thing out of the week after she was born was we didnt give a second thought. We knew obviously that theyd come and theyd done the test. But with everything else that went on in hospital – I mean we probably, we probably did have leaflets. And I think if wed had had a nice delivery and sort of, you know, a nice couple of days, then I don’t know, it might have been different. But we, it’s just one thing we just didnt give a thought to. It’s just something that hospitals do, mainly for their records, not for anything that – unless there is a problem obviously that we need to know about.

This couples baby had newborn screening and was found to be a sickle cell carrier. The parents were not really aware that sickle cell was one of the things being screened for in the heel prick test. The birth had been difficult and the baby had a few health problems at first, so they had other worries on their mind at the time. They were shocked to get results in a letter saying the baby had abnormal haemoglobin. With the letter came a leaflet about sickle cell disorders. The mother had known a colleague at work with sickle cell anaemia who was very sick, so they were very anxious about what this meant for their baby. They would have preferred to get their daughter’s screening results in a phone call or appointment where they could ask questions and be reassured, rather than in a letter.
However, once someone came to their home to take blood samples from the parents and explained that being a carrier would make no difference to the baby’s health, they felt reassured. They found the diagrams explaining inheritance especially helpful. They received a phone call when their own results came through, telling them the mother was a carrier. Now they are able to see this as something useful to know, especially when their daughter grows up and wants to have children of her own, but not something they need to worry about.
Both parents are from white families as far back as anyone can remember, but they now understand that white people can also be carriers. The mother points out that because most people think of sickle cell as a condition affecting people from minority ethnic backgrounds, being told the baby is a carrier without any additional information might make some men think their partner has been unfaithful. This couple have a trusting relationship so it was not a problem for them, but it could cause serious relationship problems for some couples, especially just after birth when parents are feeling emotional, tired and stressed. This is another reason why the couple think written communication of results is not enough.

Were you surprised when the results came back that it was you? I mean how did you feel when you got that result?

FatherWell, we both–.

Mother I don’t know. We were –

FatherWe both sat here for an hour, didnt we, trying to work out —

Mother Who it could be [laugh].

Father- who it was. We were just virtually trying to, you know, look at Internets and then see who can trace the family tree furthest back, and see. We was chasing family, werent we? And pushing mums and dads and going back as far as you can with each other’s family to, you know, the furthest relative being alive and asking questions.

Mother I mean, we phoned parents. It’s me. [laugh] Is it you? I don’t know. Well, it must be. We don’t, I mean Ive said to them, don’t, I’m not bothered. Theres, as long you’re happy, if you want to know, then that’s fine. But I don’t need to know. It’s just one of those things.

And as far as they know theres no history of any –

Mother No.

– mixed marriages or anything?

Mother No. I mean the only thing we were told as well was that it’s European, Mediterranean.

FatherMediterranean, it could be, yeah.

Mother So it could be Spanish. But, you know, it could be – we have no idea. I mean, me and my father have sat and chatted. And weve tried to go back and hes reminisced and then hes remembered somebody else. Oh, but they were adopted. And so as soon as he said that, we – theres no – I mean, presuming it’s my father. It might be my mother. But either way I says, don’t rush off to the doctor’s and have blood tests. Theres no need. I said, Because were fine.

And youve talked to your sister?

MotherI have talked to her, yes, and a female cousin as well, and said, you know, Look, it could be, you could have it. You could just be a carrier. Again, theres no harm to you. But just bear it in mind. But we, I was under the impression it was going to be antenatally as a – I just feared it was a bit more common now. It was becoming more common within the white community. So it was going to become more mainstream on testing.

Footnote this couple are both white and both families are white as far back as they can recall. There is no evidence that sickle cell carriers are becoming more common among the white population, but with the national screening programme it is more likely that they will be identified, whereas previously they might never have known they were carriers.

Going back to sort of the heel prick, and what you understood about what they were testing, I mean, what information did they give you about the heel prick? Can you remember much about what you had?

MotherNo. Because we didnt have really too good a time in hospital after.

FatherNo, because you had a rough time, didnt you?

MotherSo it was all, it was all a bit of a…

FatherWe just took it that that was just part of the normal having a newborn baby. That, you know, that was just a treatment they do as a standard.

MotherSo they —

FatherThey take bloods, do the tests. And then while they were doing that we were more concentrating to get, get the wife —

MotherBut she had quite a few, she had a couple of heel pricks because she was jaundiced. So they needed to, I knew that it was, it’s, they were looking for the – is it the clotting? She had two or three, didnt she? She had the normal one for the testing, and they kept coming back because she was jaundiced and she was [laugh]

And you, did you have a rough birth then?

MotherYes [laughs].

Right. So your mind is on other things completely than the detail of what medical tests are being carried out?

MotherYes. Well, yeah, I mean wanting to tend to her, and I ended up having an emergency caesarean. So the shock of having to have that, not being able to move for a couple of days after, the baby being jaundiced, picking up an infection, having high blood pressure, and then finding a heart murmur in her wasnt really a [laugh] very first good week.

FatherWithin the first three days or something, wasnt it?

MotherSo we didnt, it was all a bit of a blur. The sort of, it was a shock when the letter come through the post. Because I think it was just one thing out of the week after she was born was we didnt give a second thought. We knew obviously that theyd come and theyd done the test. But with everything else that went on in hospital – I mean we probably, we probably did have leaflets. And I think if wed had had a nice delivery and sort of, you know, a nice couple of days, then I don’t know, it might have been different. But we, it’s just one thing we just didnt give a thought to. It’s just something that hospitals do, mainly for their records, not for anything that – unless there is a problem obviously that we need to know about.