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Screening for sickle cell and beta thalassaemia

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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 >> 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 >> 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.)

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 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

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 19 >> She feels she couldn't cope with another child with sickle cell anaemia. Her daughter has been well so far, but she knows another child who has had a

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 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.

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 >> 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 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 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 beta thalassaemia and other variants >> Interview 13 >> They would have liked to hear other parents' experiences of making a decision. They were worried what life would be like for the baby and for themselv

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 03 >> From her experiences in hospital she was worried what life would be like for a child with sickle cell anaemia. (Read by an actor.)

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 03 >> She couldn't decide what to do at first. Her husband said he'd support her whatever her decision. Ringing a confidential church helpline helped her th

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal beta thalassaemia and other variants >> Interview 15 >> They gathered lots of information and decided to continue the pregnancy but it was a difficult choice. In the end only the parents can make this decis

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal beta thalassaemia and other variants >> Interview 21 >> She had CVS in her second pregnancy after her mother-in-law had a baby with beta thalassaemia major, but felt it was too late to have a termination wh

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 03 >> She would have liked someone to tell her that although many people with sickle cell anaemia have lots of problems, some live fairly normal lives. (Rea

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 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 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 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 >> 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 >> 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

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 02 >> Professional learning: The counsellor was very helpful. It was frightening to discuss termination, but she understands the need to prepare for differe

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 >> Antenatal beta thalassaemia and other variants >> Interview 15 >> Professional learning: He never felt any pressure from staff over what they should do, but in some ways he wished someone could have given them more d

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 09 >> Professional learning: If the midwives had booked diagnostic tests for her in pregnancy she might have gone, but they didn't pursue it very actively.

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal beta thalassaemia and other variants >> Interview 24 >> Professional learning: Her brother and sister-in-law felt pressured into having CVS and considering termination in their first pregnancy. They did not

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 03 >> Professional learning: She would have liked more positive examples of how people live with sickle cell anaemia. (Read by an actor.)

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 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 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 >> 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 13 >> Professional learning: His wife is a practising Buddhist. Her faith would not have prevented her from considering termination, though it would have be

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 19 >> Professional learning: In her current pregnancy, waiting the few weeks between discovering she was pregnant and the earliest time she could have a CVS

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

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal beta thalassaemia and other variants >> Interview 13 >> Professional learning: They would have preferred diagnostic testing earlier in pregnancy. Waiting for the results of his carrier screening test to com

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Newborn >> Interview 25 >> The baby's health is the most important thing. Parents have to act responsibly and inform themselves. [A saude du bebê o mais importante. Os pais tem

The parents discovered their baby was a sickle cell carrier as a result of newborn screening. They have since learnt the father is a carrier. Video and audio clips in Portuguese.

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.)

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal beta thalassaemia and other variants >> Interview 29 >> The earlier you are screened in pregnancy the better, so you have time to make decisions. (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 13 >> Screening raises worries and choices you would otherwise not have, especially if the baby is in fact healthy. But he is still glad they discovered the

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