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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 19 >> Having seen the effects of sickle cell anaemia in her family, she thinks screening is the best decision any parent can make.

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 17 >> Beta thalassaemia major is a very serious condition, and she would advise parents to think about screening before they have children. (Read by an acto

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 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 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 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 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

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 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.)

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 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

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 >> 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 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

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 >> From her experiences in hospital she was worried what life would be like for a child with 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 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 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 beta thalassaemia and other variants >> Interview 15 >> She tried to enjoy the rest of pregnancy but it wasn't always easy. Her partner felt guilty sometimes about what their son might go through.

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal beta thalassaemia and other variants >> Interview 15 >> They worried about how they'd manage transfusions and chelation [iron removal] therapy but she felt sure they'd cope somehow.

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 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'

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 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 >> 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 >> 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.

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 09 >> People affected by sickle cell should speak out about it. It's not a shameful condition. (Read by an actor.)

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 11 >> It is important to spread awareness about sickle cell disorders. Her local council did not understand why her daughter should not live in cold housing

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 03 >> When she has a crisis, it's the worst kind of pain she has ever had. Keeping warm helps her avoid getting crises. (Read by an actor.)

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

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Newborn >> Interview 04 >> In Nigeria her son with SC disorder was very ill with malaria. Since they have been in London, he has been as healthy as any other child. He is now 5.

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 11 >> She worries all the time about her 2-year-old daughter's health, even though she has not yet had any crises.

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

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Newborn >> Interview 18 >> Sickle cell can be managed. She tells friends what to do, so her son can have a normal social life. [On peut vivre avec la drépanocytose. Elle dit ce

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.

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Newborn >> Interview 18 >> It was hard to combine work with caring for her son. Eventually she stopped working. [C'était difficile de combiner le travail avec ses responsabilité

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal beta thalassaemia and other variants >> Interview 21 >> Since her son was three months old he has had blood transfusions every three weeks and chelation therapy three days a week. Recently he has had an inf

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal beta thalassaemia and other variants >> Interview 24 >> Her daughter remained well till she was four, then started blood transfusions. Sometimes she asks why she is ill but her brothers are well. (Audio cli

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

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 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

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 sickle cell >> Interview 06 >> Having seen family and friends with sickle cell anaemia, she felt if her child had the condition it was something she could manage. Her partner was le

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 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 beta thalassaemia and other variants >> Interview 21 >> She knew a boy locally with beta thalassaemia major who postponed his blood transfusion for a week. He collapsed and died when he arrived at the hospi

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal beta thalassaemia and other variants >> Interview 23 >> He lost two brothers to beta thalassaemia major, and a sister who died aged 30. She had a fulfilling life but he would have given anything to spare he

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 >> They bought his sister one of the first slow infusion pumps for desferrioxamine. The family dreaded school holidays when blood for transfusions was sc

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 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

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal beta thalassaemia and other variants >> Interview 15 >> Professional learning: They had lots of detailed questions about how beta thalassaemia major could affect their son's life, but they felt overwhelmed

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

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 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

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 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

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.

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal beta thalassaemia and other variants >> Interview 16 >> Professional learning: They have drawn strength from their Islamic faith in caring for their son during his bone marrow transplant. They believe medic

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 sickle cell >> Interview 03 >> Professional learning: Her worries about having a baby who could be in a lot of pain made her consider termination even though she was a Christian. (R

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 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 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 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 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.

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.

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