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• Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal beta thalassaemia and other variants >> Interview 21 >> She found out she was a beta thalassaemia carrier when she came to the UK from Pakistan to join her husband. He already knew he was a carrier. (Read b

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 >> Newborn >> Interview 04 >> She had known from childhood she was a sickle cell carrier. Others in her family were carriers but no-one had the 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 11 >> Her partner was reluctant to be screened during pregnancy. He could not believe there could be anything wrong with him.

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 19 >> In her second pregnancy she knew she was a carrier, but her then husband believed he could not be a carrier because he was so healthy. It was only in

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 07 >> 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 part

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 sickle cell >> Interview 03 >> She wanted to avoid marrying a carrier, but did not realise that carriers are fit and healthy, so her husband was not tested until she was pregnant. (

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 >> 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

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 beta thalassaemia and other variants >> Interview 17 >> She told her fiancé when she discovered she was a beta thalassaemia carrier, but they found it difficult to get him tested in Pakistan. (Read by an ac

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 sickle cell >> Interview 06 >> When she discovered both she and her partner were sickle cell carriers, she called her mum for support.

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 >> Newborn >> Interview 26 >> They tried to work out with the family where the sickle cell gene had come from. She made sure her sister and a female cousin knew about it, but her p

The parents were shocked when newborn screening results showed the baby was a sickle cell carrier. Both parents were screened and the mother is also a carrier.

• Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Newborn >> Interview 28 >> When she got her son's newborn screening test results, she rang her father to ask about family history. She discovered he knew he was a sickle cell ca

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 beta thalassaemia and other variants >> Interview 02 >> Her mum (who is part Greek-Cypriot) knew she herself was a beta thalassaemia carrier but did not realise it could affect her daughter.

Discovered she was a beta thalassaemia carrier from routine screening during pregnancy. She was not aware she was being tested. Partner was tested and is not a carrier.

• Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Newborn >> Interview 04 >> When her husband's family discovered he carried haemoglobin C and the baby had SC disorder they were scared at first. Most of them have since been tes

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 beta thalassaemia and other variants >> Interview 22 >> When her daughter grows up, the family will ask for her future marriage partner to be screened to check if he too is a carrier before agreeing to the

Discovered she was a beta thalassaemia carrier during her first pregnancy. Her husband was tested and is not a carrier. Their first daughter is a carrier. Video and audio clips read by an actor recorded in Urdu.

• Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal beta thalassaemia and other variants >> Interview 29 >> Her parents' generation would not want to tell other families because they feel there is a stigma associated with being a beta thalassaemia carrier. (

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 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 13 >> Waiting for the amniocentesis results was very hard. They had decided they would have ended the pregnancy if the baby had the condition.

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 beta thalassaemia and other variants >> Interview 21 >> Parents should not arrange marriages when the couple are still children, because it makes it harder to cancel the arrangement later on if they are bot

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 beta thalassaemia and other variants >> Interview 08 >> Their doctor advised her husband to be screened too and said that being a carrier was important information to share when they arrange marriages for t

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 23 >> Professional learning: He sees a 25% risk as being like putting your child in the middle of a four-lane road, knowing a car will come along in one of

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 sickle cell >> Interview 05 >> Professional learning: Her family are not worried that she is a sickle cell carrier, because they draw strength from their Christian faith.

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 >> Newborn >> Interview 18 >> In Africa sickle cell has sometimes been seen wrongly as a curse brought to the family by one partner. [En Afrique parfois on a vu la drépancytose à t

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 >> Newborn >> Interview 18 >> Professional learning: It was hard to support each other. She did not want her family's pity. [Ils l'ont trouvé difficile de se donner le soutien mutu

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 >> Newborn >> Interview 28 >> Professional learning: She would have liked to know before pregnancy that she was a carrier.

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 09 >> Professional learning: It would be better if the NHS could screen people before they become pregnant. (Read by an actor.)

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 beta thalassaemia and other variants >> Interview 15 >> He knew from childhood that he was a beta thalassaemia carrier, and suggested his partner should be tested during pregnancy, but they never expected h

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 >> Newborn >> Interview 04 >> Professional learning: As a Christian, she believes that God will not send you a situation you cannot manage with faith.

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 beta thalassaemia and other variants >> Interview 21 >> Parents should not arrange marriages when the couple are still children, because it makes it harder to cancel the arrangement later on if they are bot

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 beta thalassaemia and other variants >> Interview 30 >> She will advise her daughter not to marry another carrier. Parents have a duty to protect their children. If she and her husband had both been carrier

Mother discovered through screening in pregnancy that she carries Haemoglobin D Punjab. Her husband is not a carrier. Newborn screening showed her second baby is also a carrier. Video and audio clips in Urdu.

• Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal beta thalassaemia and other variants >> Interview 29 >> She felt the risk that her partner would also be a carrier was very small, so she did not ask him to get screened before marriage. (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 beta thalassaemia and other variants >> Interview 29 >> Her parents' generation would not want to tell other families because they feel there is a stigma associated with being a beta thalassaemia carrier. (

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 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 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

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 >> Newborn >> Interview 26 >> They are glad they discovered the baby was a carrier, but the mother worried her partner might think she'd been unfaithful and the baby had a differen

The parents were shocked when newborn screening results showed the baby was a sickle cell carrier. Both parents were screened and the mother is also a carrier.

• 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

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 >> Newborn >> Interview 18 >> Awareness is vital. Parents who believe a child with sickle cell will die won't seek help. [La conscientisation est indispensable. Les parents qui cr

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 19 >> She parted from a boyfriend who had sickle cell anaemia, but has regretted this now she has a daughter with the condition. She was upset when a friend

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 14 >> She has a friend with a son with sickle cell anaemia. It's better to separate if both parents are carriers [Elle a une copine dont le fils a la drépan

Mother discovered she was a sickle cell carrier in her first pregnancy. Father is not a carrier. He later changed his name and was recalled for screening when she was pregnant again. Audio clips in French.

• Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 11 >> Professional learning: Her partner did not understand that he could be a carrier and still be healthy.

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 09 >> She would have liked to know if she or her partner were carriers before they got together. Choosing your partner carefully is important for the baby.

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 >> Newborn >> Interview 04 >> Her husband said if he'd known they were both carriers, they probably wouldn't have got married. In a way she is glad they didn't know.

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 11 >> Asking a partner if they are a carrier is difficult, but having a baby with sickle cell anaemia or terminating a pregnancy is also very upsetting.

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 12 >> If she discovered her partner was carrier she might change partner rather than not have a child.

Female partner discovered she was HIV positive when she came to the UK. When she changed HIV consultant, a routine blood test showed she was a sickle cell carrier. Male partner has not yet had carrier screening.

• Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Newborn >> Interview 27 >> If they had both been carriers they would have had no more children together.

Newborn screening showed the baby was a haemoglobin E carrier. The mother was also found to be a carrier, but the father was not affected.

• 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 >> Newborn >> Interview 28 >> She plans to explain to her children in their early teens what being a carrier means, so they know they have to be careful.

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 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 08 >> Their doctor advised her husband to be screened too and said that being a carrier was important information to share when they arrange marriages for t

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 22 >> When her daughter grows up, the family will ask for her future marriage partner to be screened to check if he too is a carrier before agreeing to the

Discovered she was a beta thalassaemia carrier during her first pregnancy. Her husband was tested and is not a carrier. Their first daughter is a carrier. Video and audio clips read by an actor recorded in Urdu.

• Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 14 >> Her husband changed his name, so he was called for screening again. They called the hospital to explain. [Son mari a changé son nom, alors il a été ra

Mother discovered she was a sickle cell carrier in her first pregnancy. Father is not a carrier. He later changed his name and was recalled for screening when she was pregnant again. Audio clips in French.

• Topic
• >> Screening for sickle cell and beta thalassaemia >> Telling people you are a carrier: Implications for relationships & marriage >> Telling people you are a carrier: Implications for relationships & marriage

Telling people you are a carrier: Implications for relationships and marriage

• Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Telling people you are a carrier: Implications for relationships & marriage >> Telling people you are a carrier: Implications for relationships & marriage

Telling people you are a carrier: Implications for relationships and marriage