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• Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal beta thalassaemia and other variants >> Interview 02 >> She did not realise she was being screened for beta thalassaemia, so was shocked to learn she was a carrier.

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 >> 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 >> Antenatal beta thalassaemia and other variants >> Interview 29 >> Although she already knew she was a beta thalassaemia carrier, she has been tested again in both pregnancies. She does not mind if it helps keep recor

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 17 >> She knew she was a beta thalassaemia carrier but has been told she needs to be tested in every pregnancy - which has made her both anxious and annoyed

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 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 sickle cell >> Interview 20 >> She did not know white people could carry sickle cell so her partner was not tested.

Mother asked for screening in pregnancy because of family history and found she was a sickle cell carrier. Newborn screening showed her baby was also a carrier. Her white partner has not been screened. some of the video and audio clips are in French.

• Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal beta thalassaemia and other variants >> Interview 17 >> They were told her husband had to be tested again in another pregnancy. He went to see the nurse but refused to have the test. (Read by an actor.)

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 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.

• Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 20 >> She was not very surprised or worried by her own carrier screening results, although it was more surprising to learn her daughter was a carrier.

Mother asked for screening in pregnancy because of family history and found she was a sickle cell carrier. Newborn screening showed her baby was also a carrier. Her white partner has not been screened. some of the video and audio clips are in French.

• Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 05 >> She was shocked when she got a phone call to tell her she was a sickle cell carrier. She found it hard to take in what she was being told.

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 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

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 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

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 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 >> 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

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 20 >> She asked for her daughter to have newborn screening. She was surprised that she was also a sickle cell carrier.

Mother asked for screening in pregnancy because of family history and found she was a sickle cell carrier. Newborn screening showed her baby was also a carrier. Her white partner has not been screened. some of the video and audio clips are in French.

• Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Newborn >> Interview 26 >> They knew about the heel prick test, but they never gave it a second thought until the letter arrived saying the baby was a sickle cell carrier.

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 27 >> They had never heard of haemoglobin E until they discovered the baby was a carrier.

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 >> Newborn >> Interview 25 >> At first they worried the baby was ill. There was no interpreter to explain he was a carrier. [Estavam preocupados que o bebê tinha uma doença. Não ti

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 >> Newborn >> Interview 26 >> They did not understand at first what it meant that their baby had 'abnormal haemoglobins', and they were worried she might have sickle cell anaemia.

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 >> Even though the letter said her son's health was not affected, she did not feel reassured and wanted to talk to a counsellor straight away.

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 27 >> It was easier to understand what being a carrier is once they talked to a counsellor. The midwife helped them find information in Thai.

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 >> Newborn >> Interview 26 >> The counsellor explained what being a carrier meant and reassured them the baby was healthy.

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 >> Waiting for her carrier screening results over Christmas was not good timing, but she wasn't anxious because she knows carriers are healthy.

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 29 >> In her area there had been an information campaign to raise awareness about beta thalassaemia. This included a talk at the local Sikh temple. (Read by

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 02 >> She did not realise white people could be affected by sickle cell or beta thalassaemia until she discovered she was a carrier.

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 17 >> They asked a doctor in Pakistan about beta thalassaemia carrier screening for her partner but he did not seem to know about the condition. (Read by an

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 19 >> When she moved to a new area she had to explain the needs of children with sickle cell anaemia to a GP receptionist and the school.

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 >> Her daughter with sickle cell anaemia had been well but suddenly started having strokes. She had three strokes before the doctors realised what was wr

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 >> Newborn >> Interview 18 >> Her 9-year-old son with sickle cell anaemia has been in intensive care with respiratory problems. [Son fils âgé de 9 ans avec la drépanocytose s'est r

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 encourages her 9-year-old daughter and other family members to share responsibility for managing her sickle cell anaemia.

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 16 >> 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 del

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 beta thalassaemia and other variants >> Interview 02 >> Professional learning: She did not know what all the blood tests in pregnancy were for. It did not help seeing different midwives each time.

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 26 >> Professional learning: After a difficult birth, she did not pay much attention to the heel prick test. The results were a shock.

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 27 >> Professional learning: They had the heel prick test believing it was compulsory. The results took them by surprise.

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 >> Newborn >> Interview 04 >> Professional learning: She remembers the midwife taking some blood samples from the baby, but she was not sure at the time what they were all for.

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 02 >> Professional learning: She has been advised that her iron levels need careful monitoring during pregnancy because she is a beta thalassaemia carrier.

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 20 >> Professional learning: She has had breathing problems when diving or at high altitudes, and wonders if this is related to being a sickle cell carrier.

Mother asked for screening in pregnancy because of family history and found she was a sickle cell carrier. Newborn screening showed her baby was also a carrier. Her white partner has not been screened. some of the video and audio clips are in French.

• Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Newborn >> Interview 26 >> Professional learning: She knows carriers are healthy, but she is not sure whether health professionals need to know that she and her daughter are car

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 >> Antenatal beta thalassaemia and other variants >> Interview 17 >> She can't see why she should keep a card with her saying she is a carrier. (Read by an actor.)

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 >> Newborn >> Interview 28 >> Professional learning: She was anaemic in pregnancy, and wonders if that was because she is a sickle cell 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 14 >> Now she knows she is a sickle cell carrier she wonders if it makes her anaemic in pregnancy. [Maintenant qu'elle sait qu'elle est porteuse de la drépa

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 01 >> Professional learning: The sickle cell counsellor explained that advances in medical care have led to improvements in survival and quality of life.

His partner had routine screening in pregnancy and found she was a sickle cell carrier, so he also had carrier screening. Results unknown at time of interview. No family history.

• Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 03 >> Professional learning: It is important that people understand fully the risks they face, but it helps if counsellors can also offer some hope and reas

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 07 >> Professional learning: Counsellors need to make sure people know about all the possible complications of the condition, so they can make a properly in

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

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 beta thalassaemia and other variants >> Interview 15 >> Professional learning: It was helpful hearing from a man who had beta thalassaemia major, but they were not sure how relevant other people's experienc

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 sickle cell >> Interview 09 >> Professional learning: The booklet provided by the sickle cell counsellor was detailed and more useful than the information sheet from the midwife. (R

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 >> Professional learning: Most professionals they met were very caring and were doing their best for patients, but people shouldn't be afraid to ask ques

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 sickle cell >> Interview 20 >> Professional learning: Her white partner has never been offered screening.

Mother asked for screening in pregnancy because of family history and found she was a sickle cell carrier. Newborn screening showed her baby was also a carrier. Her white partner has not been screened. some of the video and audio clips are in French.

• Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 12 >> Professional learning: She does not believe her white partner needs to be tested because she feels it is so unlikely he will be a carrier.

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 28 >> Professional learning: Getting results by telephone rather than a letter would still have been a shock but at least then you can ask questions straigh

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 26 >> Professional learning: They received newborn screening results in a letter with a leaflet in which 'sickle cell' was highlighted. They would have pref

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 >> Antenatal beta thalassaemia and other variants >> Interview 15 >> Professional learning: When they opened the letter telling her she was a carrier it was too late in the evening to call anyone. People need reliable,

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 27 >> Professional learning: They really needed to talk to someone directly about their results, and they needed help from interpreters.

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 >> Newborn >> Interview 28 >> Professional learning: Being dyslexic, she finds reading long medical terms hard. She would have found it easier and less frightening to talk to someo

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 05 >> Professional learning: Rather than getting results in a letter or a phone call, she would have been less worried to be told to come for an appointment

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 09 >> Professional learning: She knew something must be wrong because the counsellor fixed an appointment to visit her at home. (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 17 >> Professional learning: She got a letter on the Saturday telling her the counsellor was coming on the Monday. She couldn't contact the counsellor to te

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 17 >> Professional learning: When her second baby was born, she felt the consultant paediatrician talked to her as if she didn't know anything about being a

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 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 13 >> Professional learning: They would have liked more detail about what would be involved in a termination and more support while they were waiting for hi

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 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

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 23 >> Professional learning: They were shocked that an Italian doctor told them living with beta thalassaemia major and having transfusions would be quite e

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 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

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 >> Newborn >> Interview 18 >> Professional learning: Caring for her son with sickle cell anaemia is a cross she bears, and she is supported by the example of Christ. [Soigner son f

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 beta thalassaemia and other variants >> Interview 16 >> 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

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 19 >> Professional learning: The first person she turns to with any queries is her specialist sickle cell counsellor, who provides excellent care and suppor

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 10 >> Professional learning: The support from her local sickle cell centre has kept her going. It helps to meet other mothers and know you're not alone.

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 24 >> Professional learning: She felt the specialist counsellor had not advised them very well. The family had more of a bond with the previous counsellor.

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 >> Newborn >> Interview 04 >> Professional learning: In her current pregnancy, it was nice that the sickle cell counsellor contacted her again, even though she felt she didn't need

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 06 >> Professional learning: By the time she realised she was pregnant and had screening and counselling, she was 17 weeks pregnant when she came for her CV

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 >> Professional learning: While they were waiting for their counselling appointment, they asked the health visitor about the letter saying the baby was a

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 >> Antenatal sickle cell >> Interview 09 >> Professional learning: More midwives and GPs should be trained about sickle cell disorders and beta thalassaemia major, as Britain is a multicultural

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 19 >> Professional learning: The receptionist at her new GP surgery was not aware children with sickle cell disorders should have an annual flu vaccination.

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 11 >> Professional learning: It would be better if more health professionals knew about sickle cell disorders.

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 14 >> Midwives need to take more time to explain the aim of the screening test and prepare people for all outcomes. [Les sages-femmes devraient prendre le t

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 beta thalassaemia and other variants >> Interview 17 >> Professional learning: There should be better information for staff about who has been tested already and what their results are. Asking people to be

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 >> Newborn >> Interview 27 >> Professional learning: Access to an interpreter would have helped, as his wife speaks very little English.

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 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.

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.