Interview 07
More about me...
In her third pregnancy she chose not to have diagnosis. This was partly because she found CVS quite painful, and she decided she would rather not have the anxiety during pregnancy. They were shocked when newborn testing showed the baby had sickle cell anaemia. The first child (with SC disorder) has had many crises and caring for her has been quite difficult. The third child had been very well until recently, when she had a stroke resulting from the sickle cell anaemia. The mother did not realise this was a possibility, and now feels she would have liked more information about complications associated with sickle cell anaemia before deciding whether or not have antenatal diagnosis. Although the child has recovered well, it is a constant worry that it may happen again.
She thought her partner was not a sickle cell carrier but it turned out he was. She did not have enough information to help her before choosing a partner.
She thought her partner was not a sickle cell carrier but it turned out he was. She did not have enough information to help her before choosing a partner.
So, when you were starting to think about having children of your own -
Yeah
What were your thoughts about having the condition and having children?
I was excited to have children, yeah. I didn't know that - I wasn't told then, because I didn't know anything there - that I have to look for an AA [not a carrier] partner, that have AA, so I don't know. But I mean that my baby's father is very active, he like playing football. So I didn't know that. I thought that he's AA because he doesn't get sick.
So, so when I got pregnant the doctor, the nurse told me at the hospital that I need to do a test. I said, 'Which test?' She said, 'To know if the baby' - no, she first asked me, 'The father, what type, what type is the blood'? I said, 'It's AA, I think.' Then she said about if it's not AA. I said, 'No, it's AA', because I was really arguing with her. So she told, she told me in case it is not AA this - she gave me more information that there's some test I can do to, to know if the baby is a carrier or she's actually carrying the disease. Then when I go home, I ask the baby father, my partner, what is his blood type? He said, 'It's AA', because he doesn't get sick. Anyway, didn't - before I left the nurse she told me that my partner have to do blood tests, to know, to be safe. He went to do the blood test and I was so shocked to find out he's AS [sickle cell carrier]. So I had to do the CVS test, so - and the CVS revealed the baby has sickle cell, SC [haemoglobin SC disorder]. So that's, so it's a very painful day.
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. 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.
Blood group is a different issue unconnected with carrier status. Being a carrier is about the type of haemoglobin found within the red blood cells of certain people. Blood group is about tiny markers on the surface of everyone's red blood cells, called antigens. These antigens belong to one of four main blood groups (A, B, O or AB). Everyone has a blood group. If someone is given a blood transfusion, it must be from a compatible blood group.
In her first pregnancy she decided to have CVS so she could prepare for the birth, but she would not have wanted to end the pregnancy.
In her first pregnancy she decided to have CVS so she could prepare for the birth, but she would not have wanted to end the pregnancy.
What, what made you want to go ahead with having the test?
Yeah, because I want to know at that time that if the baby is a carrier or is SC [has haemoglobin SC disorder], to prepare me for what to expect after the baby has been born. Yeah, that's why.
Did it ever cross your mind that you might think about a termination if the baby had it?
No. No. No. I was told, I was told that I can terminate it if I want, but I decided not to because, maybe because the baby is my first child. Yeah, so that's why, yeah.
And also because you've experienced'
Yeah.
SC...
Yeah, I've experienced -
- so you know what it's like?
yeah, I have the experience how it's like. That, yeah, I'm coping with it, though it's difficult, but I'm coping with it. And I have the doctors around me, sickle cell counsellors around me, so that, that motivated me not to, not to terminate it.
When she decided not to have CVS in her third pregnancy, she feels she did not know enough about complications of sickle cell anaemia, especially stroke.
When she decided not to have CVS in her third pregnancy, she feels she did not know enough about complications of sickle cell anaemia, especially stroke.
Yeah. Two months ago. Yeah, she had a stroke, and she survived it. Yeah. She had a stroke and I don't know that SS [sickle cell anaemia] is more - I know SS is serious, but I don't know how serious it is than SC [haemoglobin SC disorder]. So at the surgery the doctor said SS they can, they can have stroke, it's, it's the, it's the disease. They can have stroke. But SC they can't have stroke. So she had stroke about two months ago and she survived it. So that's why I said it. And she have to be going for transfusion, blood transfusion, every four weeks for the rest of her life. So that's why I said if, if at all I'm pregnant, which I'm not planning, I would do the CVS test.
Footnote - SC disorder is usually less severe than sickle cell anaemia, although it is still possible that people with SC disorder can have a stroke and other quite severe symptoms.
She found CVS so painful she decided not to have it for her third baby, who was born with sickle cell anaemia. Another time she would have CVS again.
She found CVS so painful she decided not to have it for her third baby, who was born with sickle cell anaemia. Another time she would have CVS again.
So you had - well, you tell me. You had the first one -
The CVS test. The second one the CVS test. The third I didn't.
Why?
I just don't want to. I just feel whatever the case, whatever the case, that God is in control of my life, and in control of the child's life. So I didn't. I just decided no, I'm not going through that process, the CVS test again. Because honestly I don't like CVS, I don't like the test. But because it reveals, it tells you, it makes me prepare for what to expect. So, I didn't have the CVS test for, for the third one. I just decided. Because I don't want to go through it again.
Despite the fact that then you had the, the anxiety, or the uncertainty, through pregnancy?
Yeah, I decided not to.
Do you look back and think actually I wish I had had it for that one?
No. Maybe the reason why I didn't look back was the processing, what I've gone through the first and the second. Yeah, because during the second and during the first pregnancy, I was sad, yeah. The second pregnancy I was happy after the result, but the first pregnancy make me sad through, you understand? So I don't want to go through all of that again. And I don't want to go through all the pain of CVS test pain, so I decided not to. But when they, I was told the result in the hospital, I think a day after I had the baby, then that's, I was sad, honestly. I was emotionally uncontrolled. But I just decided that is it, I have to be, I have to be there for the child and I have to be strong for her, so - and we are coping.
What would you say to other parents from your quite mixed experiences?
Actually, it depends on their beliefs, honestly, because if I look back, the first two pregnancies, I would say, yes, they should go. Yeah. But because nobody knew the, the pain of this - because to me I don't like the CVS pain. If it's painless, if it's painless then I think we should go for it. But [laughs] because of the pain, yeah, I don't really like it. So it depends on the beliefs of the parents, if they want to, and if they want to for the sake of the child, you understand, maybe they should go for it. Yeah. And it was, if they go for it, they will know what to do earlier, I mean, the early pregnancy, maybe I think the CVS is twelve weeks? Yeah, then they know what to do, maybe to terminate it or to leave it. But next - if I am, but I don't think so - if I'm pregnant again, I will do it.
Footnote - most women do not find CVS and amniocentesis as painful as they expected, but a few do find it very painful. Most women who have the test still feel it is worth it to find out for definite to if their baby is affected.
She was sad to discover her first baby had SC disorder, but knowing helped her be strong. She was relieved when CVS results showed her second baby was only a carrier.
She was sad to discover her first baby had SC disorder, but knowing helped her be strong. She was relieved when CVS results showed her second baby was only a carrier.
And what was it like waiting for the results to come?
Oh, the anxiety. It's I think it's two weeks, or a week - I can't remember any more. It's it looks, it looks like a long two weeks, very long, a whole - like waiting for a whole year just to receive the results. It's, it's long.
Were you worried about the risk of miscarriage when you had the CVS? Did they talk to you about that?
Yeah. No, I wasn't worried about the miscarriage, because I was told it's a 1% chance that I would miscarry. But that's why, because I knew the doctor they're telling me the right thing. Yes, so I wasn't, I wasn't worried.
And when you got the results, how did they, did they send you a letter? Did they call you?
[mm] I think I called them. I can't remember. They either called me or I called, because they didn't send me a letter. I called them then. I was told on the phone that it's SC [haemoglobin SC disorder]. So though I was sad, yeah, because every, normally every parent would like the child to be healthy, so I was sad, but that prepares me to be strong. I have to be strong for the child, that's why, yeah.
Just tell me a little bit about, sort of, the one in the middle as well because that, you also had CVS that time?
Yeah, I did the CVS test on that one, and I was very, very happy to hear that she's a carrier.
Oh, right.
Yes, I was very happy that she was a carrier. So that, that gives me relief. I was so relieved, yeah, throughout the pregnancy. Just the second one. The third one is very sad. Well, I'm coping. Yeah, I am.
Footnote - 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.
Her advice to other parents is to get as much information as possible about the condition to help them make decisions in pregnancy.
Her advice to other parents is to get as much information as possible about the condition to help them make decisions in pregnancy.
Have you got messages for other parents on, based on your experiences? What would you say to people who are going through this now?
Oh, get as much as information. It's not a sin. Trouble them. Yeah, you understand? You want more information about it, because if you don't have information you don't know what to do, you don't know what you're putting yourself through. So you just need to get as much, as much, as plenty of information you need. It's very, very good. Yeah. Or else you are at risk, and you don't know you are at risk. Because I didn't know I was at risk. Now I am, now. Because there's not enough information and I didn't know the child can have a stroke. I didn't know. Now she have, and there's the chance she can have it again. So, we need more information to make our decision, yeah.
Footnote - stroke can be a complication in both sickle cell anaemia and less commonly in haemoglobin SC disorder.
Her daughter with sickle cell anaemia had been well but suddenly started having strokes. She had three strokes before the doctors realised what was wrong.
Her daughter with sickle cell anaemia had been well but suddenly started having strokes. She had three strokes before the doctors realised what was wrong.
She, we went on holiday during the last, the last long holiday. When we went - we went to France, we went to Disneyland - and at Waterloo train station, when we get there she couldn't stand up. I was thinking, 'What's this?' Then she's - I didn't know, I thought it was a cramp. Then, about 30 minutes then she can walk normally then - fine. Then the second one was she finished using the toilet and to get down she just fell, she couldn't walk. Then she couldn't hold any object, left, and her right leg. Yeah. So I was thinking 'What is this?' Then I took her to the GP and the GP said, 'Maybe it's sickle cell' you know.
The GP, the GP just, she goes, 'There's nothing, it may be sickle cell.' Then the third one it was around six o'clock in the morning. She was crying, and I went to her bed, and when I got there she was dripping saliva coming out, out of her mouth. I said, 'What's this?' Then she was doing [demonstration of clicking sound] that sound. For a good three hours she was doing this. Then I took her to the GP and the GP said [er] maybe it, it was epileptic. I'm like, 'No', because I don't have epileptic in the family and the Dad doesn't have epileptic in the family, so where's she going to get it? Then she said, he said he would write to the hospital, then they would write to me for an appointment.
Then the next day the hospital called me on my mobile that I have to bring her on that day. Then when I got there, I explained everything to the doctor, then the doctor said she didn't think it's epileptic - it's stroke. 'Stroke? Where's she going to get that from?' And she said, - so I didn't know that SS [sickle cell anaemia] children can have stroke. 'I wasn't told.' So, 'Oh.' Then she said she would phone the SS, the sickle cell consultant to come and talk to me. That they have to do the CV - MRI scan for her. She was there in the hospital for two weeks, because they didn't let us go home. Then they did - MRI scan and they said she's slightly, the right brain is slightly damaged, that she'll have to be having transfusion every four weeks to reduce, to minimise the stroke.
Because presumably that's sickling happening'
Yeah.
' in the blood vessels in the brain.
Yeah. That's what they say, yeah. Exactly.
Footnote - Stroke occurs in about 10% of children with sickle cell anaemia.
Professional learning: Her partner assured her he was not a sickle cell carrier but they discovered later he was.
Professional learning: Her partner assured her he was not a sickle cell carrier but they discovered later he was.
So, when you were starting to think about having children of your own'
Yeah'
'what were your thoughts about having the condition and having children?
I was excited to have children, yeah. I didn't know that - I wasn't told then, because I didn't know anything there - that I have to look for an AA [not a carrier] partner, that have AA, so I don't know. But I mean that my baby's father is very active, he like playing football. So I didn't know that. I thought that he's AA because he doesn't get sick.
So, so when I got pregnant the doctor, the nurse told me at the hospital that I need to do a test. I said, 'Which test?' She said, 'To know if the baby' - no, she first asked me, 'The father, what type, what type is the blood'? I said, 'It's AA, I think.' Then she said about if it's not AA. I said, 'No, it's AA', because I was really arguing with her. So she told, she told me in case it is not AA this - she gave me more information that there's some test I can do to, to know if the baby is a carrier or she's actually carrying the disease. Then when I go home, I ask the baby father, my partner, what is his blood type? He said, 'It's AA', because he doesn't get sick. Anyway, didn't - before I left the nurse she told me that my partner have to do blood tests, to know, to be safe. He went to do the blood test and I was so shocked to find out he's AS [sickle cell carrier]. So I had to do the CVS test, so - and the CVS revealed the baby has sickle cell, SC [haemoglobin SC disorder]. So that's, so it's a very painful day.
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. 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.
Blood group is a different issue unconnected with carrier status. Everyone's blood belongs to one of four main blood groups (A, B, O or AB). If someone is given a blood transfusion, it must be from a compatible blood group, otherwise antibodies in the transfused blood will attack the existing blood cells and this could prove fatal.