Interview 16

Brief Outline: Mother discovered she was a beta thalassaemia carrier in first pregnancy. Husband still in Bangladesh and wasn't screened. Son born with beta thalassaemia major but has now had a bone marrow transplant. Video and audio clips in Sylheti.

Background: Married couple with two children aged 11 and 2. Mother aged 31, full-time mother. Father aged 34, unemployed. Ethnic background/nationality' Bangladeshi.

Our story

The mother discovered she was a beta thalassaemia carrier when she came to the UK to join her parents in her first pregnancy. Her husband was still in Bangladesh and was not screened. At the time, she did not really appreciate the significance of being a carrier and how serious a condition beta thalassaemia major can be if the child is affected. When her son was born he was fine at first, but after 3 or 4 months started to become ill. He was eventually diagnosed with beta thalassaemia major. He spent a lot of time in hospital and was often very distressed by the injections and blood transfusions. In the first 3 or 4 years of his life he had a lot of infections. 

The mother found out about a national conference on beta thalassaemia and went along to learn more. She found it very helpful to meet up with experts and other parents from around the country and learnt about advances in treatment, especially bone marrow transplants. At this time she was living with her parents and her husband was still in Bangladesh. He could not get a visa to join her because she was unable to work while caring for her son, so they could not demonstrate that they would be economically independent. She was left to cope on her own, and they both found this very stressful and difficult.

After 8 years apart, he was finally able to get a visa and join her. She became pregnant again, and at this point they were advised that if their new baby proved to be a good donor match for their son, he might be able to have a bone marrow transplant. There was a risk that the new baby could also have beta thalassaemia major, but as Muslims they decided not to have any diagnostic tests, and left it in Allah's hands. Their daughter was born healthy and their son has since had a bone marrow transplant. They were interviewed 8 months after the transplant, and so far their son has remained well, although they need to wait for a year to be sure it has been successful. 

It was hard at the time caring for him and the baby while he was in hospital for the transplant, but they are delighted with his progress and very pleased to have had the opportunity to give him a better quality of life. They draw strength from their Islamic faith, and accept what Allah wills for them. They also believe medical innovation is a gift from Allah, and encourage other parents to take up such opportunities if they can.

Her husband was still in Bangladesh and was not screened. She did not realise the significance of being a carrier until after her son was born with beta thalassaemia major. (Video in Sylheti.)

English translation, video and audio clips in Sylheti.

Mother - I got married in 1994.

1994?

Mother - Yes. After marriage I became pregnant and came to the UK by myself. My parents came before that. As I was pregnant I went for a test. They took my blood for tests to see if I was anaemic as I have just come from Bangladesh and felt weak. Having tested the blood they advised me to go to a clinic. Then they informed that I have the trait [beta thalassaemia carrier]. They also asked if my husband had the trait as well.

They found you to have the trait at that time?

Mother - Yes. My father had the trait

Your father?

Mother - Yes. That is why they asked me to get other members of the family tested. Now, I have the trait, my father has it. But my mother doesn't. My brother has the trait as well. Recently my sister was diagnosed to have the trait too. Then they asked me if I married within my own family. Then I said yes. They did not do anything more, as my husband was in Bangladesh at that time and testing was not possible. Thinking now it would have been better to go for more tests, to check how well the child is, when it happens to yourself. They informed me that there is a chance to have the illness [beta thalassaemia major] if you marry within the same family. After that, they didn't really do much.

Did you understand at that time what having the trait meant?

Mother - No not really, they explained what happens if children have the trait, that you'll have to be given blood [if the baby has the condition], and I was young then and did not take it so seriously. I was not sure that after the birth the child would require transfusions, and after that the iron levels would be high, and with high iron levels what could happen to the child. I did not know what all these meant. I did not take it so seriously.

Your father, having the trait, was there any problem?

Mother - No not really, they said that it could be in the same generation or others might have trait as well. At that time they weren't so advanced. I saw previous traits and I heard of things, they weren't improved. Slowly things did improve. I'm talking about 11 years ago. At that time they did not know so much as they do now. All that they knew was where the trait comes from in a generation and it's passed on from the family.

Her baby son was very unwell for a while before beta thalassaemia major was diagnosed. The treatment was distressing. At first she did not realise the condition was permanent. (Video in Sylheti.)

English translation, video and audio clips in Sylheti. 

Mother' Even after the birth of my child I did not realise much. Everything was Ok with him. His weight was also Ok. After 2-3 days of his birth, they said that he has developed Jaundice. They kept him (suppose in the hospital) for one week, 4 weeks 4 / 5/6 days and then sent him home. Then the midwife came and said he was worse and kept him another week in the hospital. His eating, sitting and everything were normal. It was after about three or four months while after eating he wasn't able to digest and he did not have any appetite and his stomach was upset. At that time they sent us to another hospital, where we stayed for a week with him but they couldn't find anything. While he had a little relief they told us it is far away (from your home), take him home as he seemed to be ok.

They said if he did get worse they would put him on a drip. Having stayed about 8/9 days in the hospital he came home. But after only a couple of days he became ill again. He had a temperature, upset stomach and was constantly crying. He was only four / five months old and wasn't able to communicate. Just constantly crying. His GP came out and advised us to go back to the same place in the hospital. They should check him very well. The child was helpless and unable to communicate. He said they should check the blood well to see why the child has the difficulty. Already a good number of days have elapsed and he is not recovering, rather getting worse. 

So we went back to the same ward. They did further tests and kept taking his blood. A special doctor came to see him to explain in detail. They said that they were not quite sure what was going on. They continued with further tests. They tested his blood for three times to find out what was happing with him. At that time they did the treatment. However if your GP is helpful and refers you to the hospital then you could receive better treatment. Our GP was very helpful during this time. They did the treatment and understood. The doctor was from our community. He explained to us well and offered a lot of moral support and told me not to worry. Later on'

So the doctor at this time explained things?

Mother' Yes he explained, and another doctor came, who also explained things as well and told me about the condition of my child. Advised me to'

Did they tell what illness it was?

Mother' Yes, at that time they told me.

After how many days the illness was detected?

Mother' About two weeks after staying in hospital. Then the doctor'

So at the beginning he just went to the hospital and came back, at that time they didn't know about the trait?

Mother' No, their' said they didn't realise. Sometimes they say 5 months, some say 3 months, sometimes after a few years they suspect the illness [beta thalassaemia major]. So one hospital to another hospital didn't know. That hospital was quite far and they didn't know. So they got doctors from other hospital to make me understand, and conduct tests to make sure, and then they said treatment would be like this, he would need injections and blood. At that time I didn't realise much that it could get worse, I thought after a few months he would get better, but after they said it was treatment for the rest of his life. After I returned I had an accident with him b

She first heard about bone marrow transplants as a possible treatment for beta thalassaemia major when she attended a national conference. She was dealing with her son's care all alone. (Video in Sylheti.)

English translation, video and audio clips in Sylheti. 

Mother' After I joined a conference group

What group?

Mother' It was a thalassaemia group. It was in Manchester, Blackburn, London, Greenwich - the conferences were there. I went to Manchester and Birmingham once.

With him [son]?

Mother' At first I went without him and he was too little, didn't want to travel with him on such a long journey. I left him with my parents, I left him there and went. Then when he was a little older and more understanding, I took him twice. They had a workshop for children so he went and sat there, so I took him there. Doctors were there, they used to explain the different treatments. Tablets can replace injections. One benefit from attending these conferences is that you can learn about things and I learnt about bone marrow transplants.

Father' From what other countries'

Mother' Every year when there's a conference, a leaflet comes to my house.

At that time was your husband there?

Mother' No, he's been here [UK] for 3 years. Because I couldn't work, they wouldn't grant a visa, I didn't know if I should be with him [son] or not, because needs a guardian for 24 hours. And I need to be with him and none can replace me. Going to hospital, talking to doctors, what the problem is, what we need, for all this I am needed, and my parents can't speak English.

Do they live nearby?

Mother' They are, they are near, before we used to live in one house, after his bone marrow we got a new house, and we worked on it ourselves.

Mashallah

In her second pregnancy she learnt the new baby could be a donor match for her son to have a bone marrow transplant. There was a risk the baby might have beta thalassaemia major, but they left it in Allah's hands. (Video in Sylheti.)

English translation, video and audio clips in Sylheti. 

So did you find out about the bone marrow transplant for thalassaemia? 

Mother' Yes in that conference. 

Which conference?

Mother' In numerous areas, Manchester, Blackburn, Birmingham

So how did you understand?

Mother' At the conferences they had separate doctors who noted things and reported back to us about the transplants they had done. They let us ask questions, and whoever had questions could ask about problems. So I asked the doctors for advice and they said that I should speak to my doctors at the hospital where my son is receiving treatment. 

Were you pregnant at that time?

Mother' No.

Were you aware about how a normal sibling could provide life-saving treatment?

Mother' They told me after the doctors

So you weren't pregnant before the transplant?

Mother' No at that time I wasn't, when I first wanted the transplant, I wasn't pregnant. At that time, they explained to me that'

Did they say if it's a brother or sister then a transplant'

Mother' No at first they told me how it can be done, that if you had the same problem with a second child, its not 100% sure, there was 50% chance of the second child being born with thalassaemia [carrier]. I did not want to take the risk, so I told them that they were not 100% sure if it would be the same, it could be different. There's no guarantee, then I said, can it be done somewhere else? They said, elsewhere, if there is a matching, a chance can be taken, but may not be successful. The way you've been successful with your child's transplant, we can give a guarantee, we can maybe give 98/98% guarantee, but here we can give 50%, so there's more risk involved. So then they said, after getting pregnant'

So did you get pregnant in this hope or just?

Mother' Just actually. I left it to Allah'

You put faith in Allah

Mother' I left everything in Allah's hand, whatever Allah wills. They told me to have a test when I was pregnant'

Father' We thought whatever happens, we didn't go for tests, we left everything in the hands of Allah, whatever happens, it is the will of Allah. Praise be to Allah, my daughter is ok.

So did you go for any tests at this time?

Mother' No they called us a few times, but I told them I didn't want to. 

So when you had the first test, did they do it by themselves? By their own accord?

Mother' First one?

Yes.

Mother' The first child? 

Yes

Eight months after the bone marrow transplant their 11-year-old son is doing well and needs no transfusions. It was hard at the time, but they are delighted he had the opportunity to have the operation. (Video in Sylheti.)

English translation, video and audio clips in Sylheti. 

So, how many years ago did the transplant take place?

Mother' How many years'well it took place in September' 

Father' We lived in separate accommodation to look after him properly; he was in hospital for a long time, we took care of him separately. 

When in the hospital?

Father' yes

Mother' There was a separate room'

They gave it?

Father' yes

What did you do with your baby?

Mother' She was with my mum'

Father' Sometimes she stayed with us. Or stayed with grandparents a lot.

Mother' Yes sometimes she stayed with us for a few days. 

Father' They helped a lot

Mother' I have a sister-in-law; she has always been very helpful. 

Father' So during his treatment, it was important for us to be with him all the time, it gave him hope and made him feel brave. Also, with our presence, it meant that we were always in touch with his medical progress, changes to treatment plan, medication etc. We have received immense help from the medical professionals. They always kept us informed. They told us about his blood count and this kept us going. If sometimes it went wrong, they have taken immediate measure to control it. I mean, all fate is within Allah's hands, but with the advance of medicine, when new treatments/medicines become available, you should try it. It's invented for the patients. For the sake of the patient, for our son, we tried it.

How long was your son in hospital?

Mother' About 5 to 6 weeks. 

When did you find out that everything was ok, that the treatment was successful?

Mother' Well, its ongoing'

Father' There's a report

Did they let you know immediately?

Mother' No not immediately, about a year.

One year? The year isn't over then.

Mother' No, not yet. 

Nonetheless, is he ok?

Mother' Yes'

Father' Yes, god willing he is fine, even you saw him earlier.

Yes, thank god. 

Father' But he has a report. And the doctor briefs us regularly about this report and from this, we are hopeful that his prognosis is well. 

Since the treatment, have you

Professional learning: When she was first told about beta thalassaemia, she didn't realise how serious and life-threatening it was. (Video in Sylheti.)

English translation, video and audio clips in Sylheti.

Mother' I got married in 1994.

1994?

Mother' Yes. After marriage I became pregnant and came to the UK by myself. My parents came before that. As I was pregnant I went for a test. They took my blood for tests to see if I was anaemic as I have just come from Bangladesh and felt weak. Having tested the blood they advised me to go to a clinic. Then they informed that I have the trait [beta thalassaemia carrier]. They also asked if my husband had the trait as well.

They found you to have the trait at that time?

Mother' Yes. My father had the trait

Your father?

Mother' Yes. That is why they asked me to get other members of the family tested. Now, I have the trait, my father has it. But my mother doesn't. My brother has the trait as well. Recently my sister was diagnosed to have the trait too. Then they asked me if I married within my own family. Then I said yes. They did not do anything more, as my husband was in Bangladesh at that time and testing was not possible. Thinking now it would have been better to go for more tests, to check how well the child is, when it happens to yourself. They informed me that there is a chance to have the illness [beta thalassaemia major] if you marry within the same family. After that, they didn't really do much.

Did you understand at that time what having the trait meant?

Mother' No not really, they explained what happens if children have the trait, that you'll have to be given blood [if the baby has the condition], and I was young then and did not take it so seriously. I was not sure that after the birth the child would require transfusions, and after that the iron levels would be high, and with high iron levels what could happen to the child. I did not know what all these meant. I did not take it so seriously.

Your father, having the trait, was there any problem?

Mother' No not really, they said that it could be in the same generation or others might have trait as well. At that time they weren't so advanced. I saw previous traits and I heard of things, they weren't improved. Slowly things did improve. I'm talking about 11 years ago. At that time they did not know so much as they do now. All that they knew was where the trait comes from in a generation and it's passed on from the family.

Professional learning: They have drawn strength from their Islamic faith in caring for their son during his bone marrow transplant. They believe medical innovation is God-given. (Video in Sylheti.)

English translation, video and audio clips in Sylheti.

How else can we help families, what can we do to help families like yourselves?

Mother' To give us hope and faith.

What advice would you give them? 

Father' Although we don't really have the skills to give advice, we would say that within your family, if you do suffer from such illnesses, then you should uptake the recent developments and advances with medicine. Always keeping faith with Allah's powers, I would say to try what the doctors are offering, perhaps it will be successful. With full faith in Allah. Allah has said to benefit from medical advances. We don't know how the illness will progress, for that reason; it is important to inspect any new inventions or advances in the medical profession that may return the patient to good health. I also feel that although the treatment processes such as carrying the bag, the injections, with older children it can be difficult; I have seen it benefiting my son. You have seen too. Allah has blessed my son. The rest is up to Allah. I would also hope that other families place their full faith in Allah. If their son and daughters are patients, then to take the advice of medical professionals

They need to be brave?

Father' Yes, keep your mind strong. 

Isn't it stressful staying in a hospital? Going there and coming back takes a toll.

Father' That's right, but whatever befalls you, you have to confront it and go forward, you can't keep looking backwards that's not going to work, you have to advance. My wife has said 8-9 years, I wasn't here, without me.
 

Professional learning: The mother had to care for her son on her own until her husband's visa could be arranged. It was hard for her husband not to be able to support her. (Video in Sylheti.)

English translation, video and audio clips in Sylheti.

So how much trouble was it for you for 8 yrs?

Father' For my wife?

yes

Father' My wife of course had a lot of trouble and I was always worrying, and concerned while I was in Bangladesh about my wife and child, about how they were coping, with this illness, care of my child, or how they were eating and living. So I was always in a bother, concerning this, and I felt weak mentally, and when I couldn't get a visa, I was more broken mentally, however, Allah helped me' Then suddenly, a letter came. In my country, I used to teach in a Madrasa (Islamic school), taught for 9 yrs.

Really, mashallah. 

Father' Yes. I tried to keep myself occupied, I taught about 300 - 350 children in a school. I was teaching in an Arabic schools, so praise be to Allah, I was OK. I thought that whatever problems Allah puts you in, through patience I should accept it and have patience. Everyone should do this. But I would like to propose something here through you, 

Yes

Father' that for the guardians of these patients, if the wife's in the country and the husband is in Bangladesh, or husband in this country, wife is in Bangladesh, then this will at the end come to a resolution or permission will be given where each other's identity or legitimate married life is in place' So in this situation if there are immigration or visa problems then these should also be addressed and someone should be given the responsibility. The 9 years that has taken is very bad mentally and weakening.

Mother' This is very stressful for a person.

Father' This can affect other people's lives. You just mentioned what does the society say? In these situations the society says lots of things - for example, someone has seen this lady always on her own with a small boy in the hospital and clinic. And there is no male guardian. Then this lack can destroy someone's mentality, it's enough to do this. I am requesting to do something so this doesn't happen to anyone' Do you understand? And the truths about these situations should be upheld and people who work in social services should have a lot of input. This will help both the patient and the their carer. 

Mother' (Coughs), Sorry

Sure, definitely

Father' Today you have come here and taking our interview, this will help another patient so this will be fruitful and if another person is mentally weak but through this interview if they feel stronger then this is also helpful to the patient. And the patient's guardian, the parents or whoever, will also feel mentally strong that there was someone else in the same situation who accepted this medication and have recovered. So these people will get the mental strength to go through and reap the benefits. I hope your work brings success and thank you for it.

Inshallah. Do you want to say anything else, sister?

Mother' No, what else to say.