Screening for sickle cell and beta thalassaemia

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Sources of support

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Sources of support >> Sources of support

Sources of support

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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 sickle cell >> Interview 09 >> People affected by sickle cell should speak out about it. It's not a shameful condition. (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 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 >> 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

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 >> 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 16 >> She first heard about bone marrow transplants as a possible treatment for beta thalassaemia major when she attended a national conference. She was dea

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 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 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 >> 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 >> 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 >> Newborn >> Interview 25 >> She was 7 months pregnant when they arrived in the UK. A stranger helped them find accommodation. [Ela estava 7 meses gravida quando eles chegarom na

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 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

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Newborn >> Interview 18 >> Professional learning: The support from local counsellors and support groups has been outstanding. [L'appui des conseillers et des groupes d'entraide

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 >> Newborn >> Interview 18 >> They found it hard to talk to each other when the baby was diagnosed. They each felt guilty and alone. [Ils ont trouvé la communication entre eux très

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

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

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 >> Antenatal beta thalassaemia and other variants >> Interview 13 >> Professional learning: In the UK their only close family is his mother. His wife rang family back home in Vietnam, but they found it hard to understan

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

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

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 didn't find CVS too bad, but her partner felt faint and had to leave the room.

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

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal beta thalassaemia and other variants >> Interview 15 >> They opened the letter telling her she was a carrier late one evening. They searched the internet for information, and were very frightened by what th

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 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 11 >> The sickle cell counsellors gave her good information about the condition and what to expect. She finds the internet useful, and a parent support grou

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 11 >> The mother and baby group at the sickle cell centre helped her learn how to manage the condition. Her daughter remembers to ask for her own medicine e

Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal beta thalassaemia and other variants >> Interview 13 >> Professional learning: He wanted information about other people's personal experiences as well as factual scientific information.

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 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,

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 >> Newborn >> Interview 18 >> Professional learning: The support from local counsellors and support groups has been outstanding. [L'appui des conseillers et des groupes d'entraide

Sources of support

Sources of support

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