Interview 10

Age at interview: 33

Brief Outline:

Mother discovered from antenatal screening she was a carrier of haemoglobin C. The baby's father was no longer in the UK to be screened. A newborn test showed the baby had SC disorder.

Background:

Full-time mother, single, one child aged seven months. Ethnic background/nationality' Black African.

More about me...

This mother had screening during pregnancy and discovered she was a carrier of haemoglobin C. The baby's father was no longer in the UK and was not screened. She hoped the baby would not be affected, but newborn screening showed the baby had SC disorder, so the baby's father must have been a sickle cell carrier. So far the baby has been well, and the mother feels she has been very well supported and informed by her local sickle cell counsellors. 

She believes screening is important, even if the test results can be upsetting. Her message to other parents is that plenty of care and support is available for people affected by sickle cell disorders, and they should not give up hope. 
 

She believed it was the law that she had to have screening. She was upset to discover she was a...

Well, I went to the hospital. You know, I was pregnant and I had a normal blood test that everybody does. They didn't ask me whether I wanted to have it or not. They just said that it's the law that - yes - that everybody, every pregnant woman is supposed to go through it. And then I said, 'Okay. Fine'. And then one day, I think when I was about 5 months pregnant or so, I had a call from a lady, I think from the sickle cell department that I need to come and see them. So I went, and then I was told there I had a trait of sickle cell in my blood, and that I need to bring my partner also to have a test, and that there's a 25 per cent chance that my baby could have the disease. My partner wasn't in this country, so I told them I couldn't, you know. 

Looking back, when, when you said they, they gave you the blood test and told you it was just the law, how do you feel about that, looking back?

Well [pause]. I think - it's okay. Sometimes you'd be walking around, and you wouldn't know what is really happening in your system. You understand? So I was okay with it. But I wasn't expecting any bad news, you know. I was hoping that everything would be okay. So when I had the bad news I was, you know - I think since then my life hasn't been very, I haven't been, you know, a happy person.

Footnote' no-one has to have screening if they do not want to - it is a choice.

Personally she was glad she did not know before birth that her baby had SC disorder, because she...

As I told you, I had my own problems that I was dealing with. So maybe they gave me much information but, you know, I felt the problem I had was much bigger than that kind of thing. And also I was thinking, 'Well, my child is unborn, you know. I'm still pregnant, and how could I...?' So I was hoping that everything would be okay. So I didn't give it much of a thought till after the birth of the baby. And then the same person called me again. It was then that I realised, no, there's a problem with my baby also.

Looking back, would you actually have liked to know before birth that your baby was affected? Would that have been good for preparing yourself or would it just have made you anxious?

Well, in my condition, I think it's good I knew after birth. Because as I was saying, I had my own problems that I was dealing with at that time. So it's good I knew. By then I had been able to deal with my own problems, you know. Getting to know it whilst I was also dealing with my problems, I think that would have been devastating, you know - very bad for me. So I think - well, I think it's better for parents to know before they have the baby, yeah. I think that's a good thing. So that you have the choice of, you know, whether continuing the pregnancy or...

During pregnancy she had so many other problems she wasn't really worried about being a carrier....

I had a call from a lady, I think from the sickle cell department that I need to come and see them. So I went, and then I was told there I had a trait of sickle cell in my blood, and that I need to bring my partner also to have a test, and that there's a 25 per cent chance that my baby could have the disease. My partner wasn't in this country, so I told them I couldn't, you know. 

So after some time they wrote to me telling me that, well, they can't tell me whether my baby was going to have the disease or not, so I should just wait till after the birth of the baby, then they will give me the results. So after I had the baby, after about three weeks, I had a call from the same lady that she wanted to come and see me. And then when she came she told me, well, my baby had the sickle cell disease and she was SC, SC [had haemoglobin SC disorder]. So, I felt very sad, you know. I was very upset, because I had other problems, my own problems that, you know, I was trying to deal with. So I was very upset, you know. 

Did anybody say to you during pregnancy that perhaps you could have a diagnostic test, a CVS or an amniocentesis, when they test the baby still in the womb for the condition?

Hmm, well, I can't remember anything like that.

Looking back -

As I was saying, I had my own problems that, you know, I was dealing with. So I wasn't very serious about the sickle cell, you know. I thought everything would be okay. In my family, you know, there was nothing - that kind of sickle cell, you know. So I was just, so when they told me I had the C trait [was a carrier of haemoglobin C], I wasn't so much bothered about it so much.

Footnote' A woman whose partner does not attend for screening can be offered a diagnostic test in pregnancy (CVS or amniocentesis) if she wishes to know for certain if the baby is affected.

Haemoglobin SC disorder is a type of sickle cell disorder in which the child has inherited hameoglobin S (sickle cell) from one parent and haemoglobin C from the other. Whilst it is a type of sickle cell disorder, it is a distinct condition. The symptoms can be similar to sickle cell anaemia, but SC disorder is often (but not always) milder in its effects than sickle cell anaemia. This mother was a carrier of haemoglobin C, and the baby's father was a sickle cell carrier.

Professional learning' The support from her local sickle cell centre has kept her going. It helps...

You mentioned the, the support from the Sickle Cell Centre - what other sources of help and support have you had?

Every month we normally go there. Once in a month, every Wednesday in a month, we go there and then the ladies they talk to us, you know, what to expect. Sometimes we watch videos. And then they talk to us what to expect or how to realise it when your child is having a crisis, that kind of thing.

Do you talk much to the other mothers at the group? Is that helpful?

Yes, yes. I think it's helpful, you know, your going there and then knowing that you're not the only person having that problem, you know. And then also there are people who come there and then they talk to us about how they've been able to deal with their problem, with their grown-up children, how they were able to deal with the problem, and that kind of thing. So I think it's, they've been very supportive, yeah.

I'm very happy about the care and the support, you know, they've given me. I think I'm very happy about it. That is what is keeping me alive, you know, now. Always reassuring me that there is hope, you know. There are medications, there are support groups and that kind of thing. So I just want to thank all the health professionals involved in my care and my baby's care. We are very grateful. They should continue with their good work.