Screening for sickle cell and beta thalassaemia

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Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal beta thalassaemia and other variants >> Interview 16 >> 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 be

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.

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 03 >> Choice is really important. Screening and diagnosis help you make choices, whatever your opinions. (Read by an actor.)

Woman with haemoglobin SC disorder. Husband discovered he was a sickle cell carrier. Had CVS in all three pregnancies. The first and second babies had SC disorder, but the third had sickle cell anaemia. Video and audio clips read by an actor.

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal beta thalassaemia and other variants >> Interview 08 >> It is better to know in advance if your child has beta thalassaemia major, but as a Muslim she is against termination.

Mother tested in first pregnancy and discovered she was a beta thalassaemia carrier. Husband was also tested and is not a carrier. Both their daughters are carriers. Interview translated into English from original in Urdu and Mirpuri.

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal beta thalassaemia and other variants >> Interview 21 >> Women should check if they are pregnant as soon as possible, so they can have screening and diagnosis early in pregnancy and have a termination if the

Both partners knew they were beta thalassaemia carriers. Second child born with beta thalassaemia major. Mother has had CVS in two pregnancies since, and would terminate the pregnancy if the baby was affected. Video and audio clips read by an actor and recorded in Mirpuri.

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 05 >> She would still have married her husband even if they'd discovered they were both carriers before marriage.

The couple discovered in pregnancy they were both sickle cell carriers. She felt strongly as a Christian that she did not want any diagnostic tests, and has faith her baby will be healthy.

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 07 >> 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.

Mother has hameoglobin SC disorder; partner is a sickle cell carrier. Had CVS in two pregnancies. In third pregnancy chose not to have diagnosis; baby born with sickle cell anaemia and has since had a stroke, which the mother did not realise could happen.

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal beta thalassaemia and other variants >> Interview 15 >> They had CVS to help them prepare for having a baby with beta thalassaemia major. They might have thought about ending the pregnancy if the baby had o

Father knew he was a beta thalassaemia carrier. Mother discovered in pregnancy she was also a carrier. Couple had CVS and were told the baby had beta thalassaemia major. Since birth the baby has been well and has not needed transfusions as expected.

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal beta thalassaemia and other variants >> Interview 13 >> They decided to have amniocentesis straight away. They felt they would want to end the pregnancy if the baby was affected.

Routine pregnancy screening showed she is a carrier of beta thalassaemia, and that he carries haemoglobin E. They had amniocentesis, and the baby was unaffected. They would have had a termination if the baby was affected. Interview mainly in English with some brief discussion in Vietnamese.

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 03 >> The risk of miscarriage from CVS was less important than finding out whether her baby had sickle cell anaemia. (Read by an actor.)

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 06 >> She took a long time to decide to have CVS. She became ill with worry and in the end decided it was better to know if the baby was all right.

During first pregnancy couple discovered they were both sickle cell carriers. CVS confirmed the baby did not have the condition and was not a carrier.

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal beta thalassaemia and other variants >> Interview 21 >> After seeing how hard life with beta thalassaemia major is for her son, she wanted diagnostic tests early in every pregnancy. In his case she found ou

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal beta thalassaemia and other variants >> Interview 21 >> She has heard Islamic religious leaders explain the soul enters the unborn baby around four months. Ending a pregnancy after this is a sin, but not be

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 19 >> She comes from a strongly Christian family, but she would end a pregnancy if she thought the child would have a poor quality of life.

Mother who knew she was a sickle cell carrier. Her partner believed he was not a carrier, but her third baby was born with sickle cell anaemia. In this pregnancy she had CVS; the baby is a carrier only.

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 34 >> She has talked to an imam and been advised that ending a pregnancy is allowed in Islam if the baby has a life-threatening illness. (Read by an actor.)

Mother who has a child with sickle cell anaemia diagnosed through newborn screening. If she had known in pregnancy what she now knows about the condition she might have had a termination. Video and audio clips read by an Actor.

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Newborn >> Interview 18 >> 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 dia

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.

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 05 >> She felt strongly as a Christian that she did not want any diagnostic tests, and has faith her baby will be healthy.

The couple discovered in pregnancy they were both sickle cell carriers. She felt strongly as a Christian that she did not want any diagnostic tests, and has faith her baby will be healthy.

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal beta thalassaemia and other variants >> Interview 24 >> Although she had CVS in her first pregnancy she knew she would not terminate. In her other pregnancies she had no tests and has left it to Allah. (Aud

Both parents are beta thalassaemia carriers. Had CVS in first pregnancy. Baby diagnosed with beta thalassaemia major and they continued the pregnancy. In three pregnancies since they chose not to have antenatal diagnosis and none of the children is affected. Some audio clips in Mirpuri. Sister-in-law also interviewed in English.

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal beta thalassaemia and other variants >> Interview 24 >> She is glad their daughter who has beta thalassaemia major was born and that they did not agree to termination. (Audio clip in Mirpuri.)

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal beta thalassaemia and other variants >> Interview 15 >> They might consider testing again for other conditions such as Down's syndrome but not for beta thalassaemia, given how well their first child is [now

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal beta thalassaemia and other variants >> Interview 15 >> The decisions you make in a first pregnancy may be different to those you make once you know what it feels like to be a parent.

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Newborn >> Interview 04 >> Now she has a son with SC disorder, she decided to have no tests in her current pregnancy because she would never end a pregnancy for this condition.

Mother knew she was a sickle cell carrier; husband was re-tested when their son was diagnosed with SC disorder, and found he was a haemoglobin C carrier. Child is doing well. Pregnant again at time of interview, no further testing.

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 07 >> 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 stro

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 03 >> She was given a clear explanation of what CVS would involve, and did not find it too painful. (Read by an actor.)

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal beta thalassaemia and other variants >> Interview 15 >> She was upset during the CVS. It was not especially painful, but she was feeling emotional and worried about the baby.

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 07 >> 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.

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal beta thalassaemia and other variants >> Interview 13 >> Waiting for the amniocentesis results was very hard. They had decided they would have ended the pregnancy if the baby had the condition.

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 19 >> She had to call to ask about her CVS results because she couldn't bear the uncertainty. It was a relief to learn the baby was only a carrier.

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 06 >> Waiting for the CVS results seemed like a death sentence, and she felt very ill. Being told the baby was not affected was a turning point.

During first pregnancy couple discovered they were both sickle cell carriers. CVS confirmed the baby did not have the condition and was not a carrier.

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 07 >> 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

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 03 >> She was shocked to be told that the CVS showed her third baby had sickle cell anaemia. She had always thought she would have a termination in this sit

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 11 >> When she became pregnant again she was so worried about having another baby with sickle cell anaemia that she decided to have an abortion straight awa

Mother knew she was a sickle cell carrier; partner had screening late in pregnancy. She was shocked when the baby was born with sickle cell anaemia. Although the baby is well, she was so afraid of having another affected baby she ended her next pregnancy.

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 07 >> Her advice to other parents is to get as much information as possible about the condition to help them make decisions in pregnancy.

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal beta thalassaemia and other variants >> Interview 24 >> It was very stressful knowing in pregnancy that the baby had beta thalassaemia major, especially because other family members had died from the same c

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 05 >> She would not want to know in pregnancy if her baby had a sickle cell disorder, because it would make pregnancy too stressful.

The couple discovered in pregnancy they were both sickle cell carriers. She felt strongly as a Christian that she did not want any diagnostic tests, and has faith her baby will be healthy.

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 06 >> She didn't find CVS too bad, but her partner felt faint and had to leave the room.

During first pregnancy couple discovered they were both sickle cell carriers. CVS confirmed the baby did not have the condition and was not a carrier.

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 10 >> Personally she was glad she did not know before birth that her baby had SC disorder, because she was already facing enough problems in her life.

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.

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 09 >> She decided not to have antenatal diagnosis because she didn't want to feel stressed during pregnancy, but it was still hard not to worry about the ba

Mother discovered she was a sickle cell carrier in pregnancy; the baby's father was reluctant to have screening. After the birth, she was shocked to discover the baby had sickle cell anaemia. Video and audio clips read by an actor.

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 10 >> During pregnancy she had so many other problems she wasn't really worried about being a carrier. She was upset when the newborn test showed her baby h

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.

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal beta thalassaemia and other variants >> Interview 16 >> 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 h

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 06 >> Professional learning: She was very satisfied with the counselling she received. She had not realised what the risks were and it helped her decide to

During first pregnancy couple discovered they were both sickle cell carriers. CVS confirmed the baby did not have the condition and was not a carrier.

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 07 >> Professional learning: She needed to know more about the risks of stroke with sickle cell anaemia before making decisions about antenatal diagnosis.

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal beta thalassaemia and other variants >> Interview 21 >> Professional learning: She explains the teaching of some Islamic scholars about the possibility of ending a pregnancy before the soul enters the unbor

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 19 >> Professional learning: She would consider ending a pregnancy, even though she comes from a strongly Christian family.

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal beta thalassaemia and other variants >> Interview 29 >> Professional learning: She feels personal choice and attitudes are becoming more important than religion for Sikhs of her age compared to her parents'

Mother discovered as a student she was a beta thalassaemia carrier. When she became pregnant the first time her husband was tested and is not a carrier. Video and audio clips read by an actor.

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal beta thalassaemia and other variants >> Interview 21 >> Professional learning: She wants diagnostic tests as early as possible in pregnancy, so she could have an early termination if the baby had beta thala

Deciding what to do after diagnosis

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Deciding what to do after diagnosis >> Deciding what to do after diagnosis

Deciding what to do after diagnosis

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal beta thalassaemia and other variants >> Interview 29 >> She often felt unwell as a child, and was diagnosed with anaemia. At university she discovered she was a beta thalassaemia carrier. (Read by an actor.

Mother discovered as a student she was a beta thalassaemia carrier. When she became pregnant the first time her husband was tested and is not a carrier. Video and audio clips read by an actor.

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Newborn >> Interview 28 >> She asked to be tested for sickle cell some years ago. The result came back negative, but she discovered she was in fact a carrier after her son was s

Newborn screening showed the baby was a sickle cell carrier. The mother had been tested years ago and told she wasn't affected, but a new test showed she was a carrier.

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 19 >> They had a long wait for the appointment. It was painful, but she was determined to have the test and get a firm diagnosis. Her partner found it hard

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal beta thalassaemia and other variants >> Interview 16 >> 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

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal beta thalassaemia and other variants >> Interview 15 >> They were told the baby would have beta thalassaemia major and would almost certainly be dependent on blood transfusions, but in fact he has remained

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal beta thalassaemia and other variants >> Interview 29 >> She often felt unwell as a child, and was diagnosed with anaemia. At university she discovered she was a beta thalassaemia carrier. (Read by an actor.

Mother discovered as a student she was a beta thalassaemia carrier. When she became pregnant the first time her husband was tested and is not a carrier. Video and audio clips read by an actor.

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 05 >> She would not want to know in pregnancy if her baby had a sickle cell disorder, because it would make pregnancy too stressful.

The couple discovered in pregnancy they were both sickle cell carriers. She felt strongly as a Christian that she did not want any diagnostic tests, and has faith her baby will be healthy.

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal beta thalassaemia and other variants >> Interview 17 >> She asked for screening when she got engaged. She knew there was beta thalassaemia on her father's side of the family. She was upset to discover later

Mother who is a beta thalassaemia carrier, and her husband is not a carrier. They have been told in several pregnancies they need to repeat the test, which has caused anxiety. Video and audio clips played by an actor.

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal beta thalassaemia and other variants >> Interview 24 >> Professional learning: They have experience of a family member who was diagnosed with beta thalassaemia major but has remained healthy, so they do not

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Newborn >> Interview 28 >> She asked to be tested for sickle cell some years ago. The result came back negative, but she discovered she was in fact a carrier after her son was s

Newborn screening showed the baby was a sickle cell carrier. The mother had been tested years ago and told she wasn't affected, but a new test showed she was a carrier.

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Newborn >> Interview 04 >> Her husband had been tested in Nigeria and told he was not a sickle cell carrier. It was only when their baby was born with SC disorder that he discov

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal beta thalassaemia and other variants >> Interview 15 >> Their baby's health has so far been much better than predicted, so they are glad they decided not to end the pregnancy.

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 09 >> Professional learning: She knew something must be wrong because the counsellor fixed an appointment to visit her at home. (Read by an actor.)

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 10 >> During pregnancy she had so many other problems she wasn't really worried about being a carrier. She was upset when the newborn test showed her baby h

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.

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 09 >> Professional learning: She believes God does have the power to heal her son, but she would never stop giving him his medicine. (Read by an actor.)

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 05 >> She would not want to know in pregnancy if her baby had a sickle cell disorder, because it would make pregnancy too stressful.

The couple discovered in pregnancy they were both sickle cell carriers. She felt strongly as a Christian that she did not want any diagnostic tests, and has faith her baby will be healthy.

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 10 >> Personally she was glad she did not know before birth that her baby had SC disorder, because she was already facing enough problems in her life.

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.

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 09 >> She realised something was wrong when the counsellor fixed an appointment after newborn screening, but it was still a shock. The counsellor reassured

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 11 >> The newborn results showing the baby had sickle cell anaemia arrived at the same time as her partner's results. She felt very sad, and they argued at

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 11 >> The sickle cell counsellors gave her good information about the condition and what to expect. She finds the internet useful, and a parent support grou

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Newborn >> Interview 04 >> It was a shock to discover the baby had SC disorder when they thought they were not at risk, but they knew they just had to live with it.

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Newborn >> Interview 18 >> She was so upset she couldn't see the information video about sickle cell anaemia through her tears. [Elle était si triste qu'elle ne pouvait pas voir

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Newborn >> Interview 18 >> They found it hard to talk to each other when the baby was diagnosed. They each felt guilty and alone. [Ils ont trouvé la communication entre eux très

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 09 >> She decided not to have antenatal diagnosis because she didn't want to feel stressed during pregnancy, but it was still hard not to worry about the ba

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 19 >> She discovered her partner was a carrier late in her third pregnancy. She planned to have the baby adopted if she had sickle cell anaemia, but couldn'

>> Screening for sickle cell and beta thalassaemia >> Pre-implantation genetic diagnosis >> Pre-implantation genetic diagnosis

Pre-implantation genetic diagnosis

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Pre-implantation genetic diagnosis >> Pre-implantation genetic diagnosis

Pre-implantation genetic diagnosis

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Newborn >> Interview 18 >> A friend plans to have preimplantation genetic diagnosis, and has asked God's forgiveness. [Une amie va avoir le diagnostique génétique de préimplanta

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal beta thalassaemia and other variants >> Interview 23 >> They see pre-implantation genetic diagnosis as a responsible way to protect their future child's health. They do not feel it is in conflict with their

Couple knew before marriage they were beta thalassaemia carriers. His sister and two brothers died of beta thalassaemia major. They have tried pre-implantation genetic diagnosis to conceive a baby unaffected by the condition, so far without success. Video and audio clips read by actors.

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal beta thalassaemia and other variants >> Interview 23 >> Their GP gave them little help in getting tests done or finding information. They feel PGD is seen as an expensive luxury, rather than a way of preven

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal beta thalassaemia and other variants >> Interview 23 >> The laboratory staff could not be sure that any of the embryos were unaffected. The couple had already decided that if this happened they would not im

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal beta thalassaemia and other variants >> Interview 23 >> Professional learning: For them pre-implantation genetic diagnosis is compatible with their Christian beliefs, though the Catholic Church might not ag

Deciding what to do after diagnosis

Deciding what to do after diagnosis

Pre-implantation genetic diagnosis

Pre-implantation genetic diagnosis

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