• Topic
• >> Screening for sickle cell and beta thalassaemia >> Living with sickle cell disorders >> Living with sickle cell disorders

Living with sickle cell disorders

• Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Living with sickle cell disorders >> Living with sickle cell disorders

Living with sickle cell disorders

• Condition
• >> Screening for sickle cell and beta thalassaemia >> Screening for sickle cell and beta thalassaemia

Publication date: October 2006          Last update: August 2010

Review date: August 2012

 

We interviewed 39 people about their experiences of antenatal and newborn screening for sickle cell, beta thalassaemia and other haemoglobin variants. Select from the key topics below, choose from the full list of topics, or explore all the interviews.

 

Interviews in other languages, Urdu: Interview 22, 30, Mirpuri: Interview 21, 24, Sylheti: Interview 16, Français: Interview 14, 18, 20, Português: Interview 25.

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

Publication date: October 2006          Last update: August 2010

Review date: August 2012

 

We interviewed 39 people about their experiences of antenatal and newborn screening for sickle cell, beta thalassaemia and other haemoglobin variants. Select from the key topics below, choose from the full list of topics, or explore all the interviews.

 

Interviews in other languages, Urdu: Interview 22, 30, Mirpuri: Interview 21, 24, Sylheti: Interview 16, Français: Interview 14, 18, 20, Português: Interview 25.

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

Publication date: October 2006          Last update: August 2010

Review date: August 2012

 

We interviewed 39 people about their experiences of antenatal and newborn screening for sickle cell, beta thalassaemia and other haemoglobin variants. Select from the key topics below, choose from the full list of topics, or explore all the interviews.

 

Interviews in other languages, Urdu: Interview 22, 30, Mirpuri: Interview 21, 24, Sylheti: Interview 16, Français: Interview 14, 18, 20, Português: Interview 25.

• >> Screening for sickle cell and beta thalassaemia >> Screening for sickle cell and beta thalassaemia

Publication date: October 2006          Last update: August 2010

Review date: August 2012

 

We interviewed 39 people about their experiences of antenatal and newborn screening for sickle cell, beta thalassaemia and other haemoglobin variants. Select from the key topics below, choose from the full list of topics, or explore all the interviews.

 

Interviews in other languages, Urdu: Interview 22, 30, Mirpuri: Interview 21, 24, Sylheti: Interview 16, Français: Interview 14, 18, 20, Português: Interview 25.

• Clip
• Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 01 >> His partner and he had screening in pregnancy because they thought it was routine and just something everyone did.

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 10 >> She believed it was the law that she had to have screening. She was upset to discover she was a carrier, but she thinks it is important to have the te

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 20 >> She asked to have carrier screening in pregnancy because of a family history of sickle cell.

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 06 >> Her partner had screening first and found he was a carrier. By that time she was already pregnant, and so she asked to be screened too.

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 >> 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 >> Newborn >> Interview 04 >> She had known from childhood she was a sickle cell carrier. Others in her family were carriers but no-one had the condition.

Mother knew she was a sickle cell carrier; husband was re-tested when their son was diagnosed with SC disorder, and found he was a haemoglobin C carrier. Child is doing well. Pregnant again at time of interview, no further testing.

• Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Newborn >> Interview 28 >> She asked to be tested for sickle cell some years ago. The result came back negative, but she discovered she was in fact a carrier after her son was s

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 12 >> She discovered by chance she was a sickle cell carrier when she changed HIV consultant and had new tests done.

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 >> Antenatal sickle cell >> Interview 09 >> The baby's father said he was afraid of needles, and he would not agree to be screened during the pregnancy. She wonders if he already knew he was a c

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

Mother who knew she was a sickle cell carrier. Her partner believed he was not a carrier, but her third baby was born with sickle cell anaemia. In this pregnancy she had CVS; the baby is a carrier only.

• Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 03 >> She wanted to avoid marrying a carrier, but did not realise that carriers are fit and healthy, so her husband was not tested until she was pregnant. (

Woman with haemoglobin SC disorder. Husband discovered he was a sickle cell carrier. Had CVS in all three pregnancies. The first and second babies had SC disorder, but the third had sickle cell anaemia. Video and audio clips read by an actor.

• Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Newborn >> Interview 04 >> Her husband had been tested in Nigeria and told he was not a sickle cell carrier. It was only when their baby was born with SC disorder that he discov

Mother knew she was a sickle cell carrier; husband was re-tested when their son was diagnosed with SC disorder, and found he was a haemoglobin C carrier. Child is doing well. Pregnant again at time of interview, no further testing.

• Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal 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 14 >> She was upset by the letter telling her she was a sickle cell carrier, but the counsellor reassured her. [Elle était bouleversée par la lettre qui a d

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 sickle cell >> Interview 01 >> He was not really worried once he understood that being a carrier does not affect your own health.

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 20 >> The sickle cell carrier test is easy to do, so she'd recommend it to everyone. [Le test pour les porteurs de la drépanocytose est facile à faire, alor

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

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

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

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

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

Newborn screening showed the baby was a sickle cell carrier. The mother had been tested years ago and told she wasn't affected, but a new test showed she was a carrier.

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

Mother knew she was a sickle cell carrier; husband was re-tested when their son was diagnosed with SC disorder, and found he was a haemoglobin C carrier. Child is doing well. Pregnant again at time of interview, no further testing.

• Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 01 >> They have not told their family yet - they feel being a carrier is not something to worry about too much.

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

Mother discovered she was a sickle cell carrier in pregnancy; the baby's father was reluctant to have screening. After the birth, she was shocked to discover the baby had sickle cell anaemia. Video and audio clips read by an actor.

• Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Newborn >> Interview 04 >> Her husband said if he'd known they were both carriers, they probably wouldn't have got married. In a way she is glad they didn't know.

Mother knew she was a sickle cell carrier; husband was re-tested when their son was diagnosed with SC disorder, and found he was a haemoglobin C carrier. Child is doing well. Pregnant again at time of interview, no further testing.

• Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 11 >> Asking a partner if they are a carrier is difficult, but having a baby with sickle cell anaemia or terminating a pregnancy is also very upsetting.

Mother knew she was a sickle cell carrier; partner had screening late in pregnancy. She was shocked when the baby was born with sickle cell anaemia. Although the baby is well, she was so afraid of having another affected baby she ended her next pregnancy.

• Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 12 >> If she discovered her partner was carrier she might change partner rather than not have a child.

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

• Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 05 >> She would still have married her husband even if they'd discovered they were both carriers before marriage.

The couple discovered in pregnancy they were both sickle cell carriers. She felt strongly as a Christian that she did not want any diagnostic tests, and has faith her baby will be healthy.

• Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Newborn >> Interview 28 >> She plans to explain to her children in their early teens what being a carrier means, so they know they have to be careful.

Newborn screening showed the baby was a sickle cell carrier. The mother had been tested years ago and told she wasn't affected, but a new test showed she was a carrier.

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

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 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 >> 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

Mother has hameoglobin SC disorder; partner is a sickle cell carrier. Had CVS in two pregnancies. In third pregnancy chose not to have diagnosis; baby born with sickle cell anaemia and has since had a stroke, which the mother did not realise could happen.

• Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 03 >> She was given a clear explanation of what CVS would involve, and did not find it too painful. (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 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

Mother who knew she was a sickle cell carrier. Her partner believed he was not a carrier, but her third baby was born with sickle cell anaemia. In this pregnancy she had CVS; the baby is a carrier only.

• Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 07 >> She 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.

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 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.

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 06 >> Waiting for the CVS results seemed like a death sentence, and she felt very ill. Being told the baby was not affected was a turning point.

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 07 >> She was sad to discover her first baby had SC disorder, but knowing helped her be strong. She was relieved when CVS results showed her second baby was

Mother has hameoglobin SC disorder; partner is a sickle cell carrier. Had CVS in two pregnancies. In third pregnancy chose not to have diagnosis; baby born with sickle cell anaemia and has since had a stroke, which the mother did not realise could happen.

• Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 03 >> She 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

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 >> 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 11 >> When she became pregnant again she was so worried about having another baby with sickle cell anaemia that she decided to have an abortion straight awa

Mother knew she was a sickle cell carrier; partner had screening late in pregnancy. She was shocked when the baby was born with sickle cell anaemia. Although the baby is well, she was so afraid of having another affected baby she ended her next pregnancy.

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

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 >> Her advice to other parents is to get as much information as possible about the condition to help them make decisions in 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 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 >> 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'

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 >> 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

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 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 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 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 18 >> She was so upset she couldn't see the information video about sickle cell anaemia through her tears. [Elle était si triste qu'elle ne pouvait pas voir

First baby diagnosed with sickle cell anaemia after birth. As a Christian, the mother chose not to have prenatal diagnosis in her next pregnancy. The second baby is a carrier. Her third baby is not a carrier. Video and audio clips in French.

• Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Newborn >> Interview 28 >> 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 >> Newborn >> Interview 26 >> They are glad they discovered the baby was a carrier, but the mother worried her partner might think she'd been unfaithful and the baby had a differen

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

• Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Newborn >> Interview 26 >> She wasn't sure if anyone needed to know they were carriers if she or the baby were ever ill.

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

• Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Newborn >> Interview 18 >> They found it hard to talk to each other when the baby was diagnosed. They each felt guilty and alone. [Ils ont trouvé la communication entre eux très

First baby diagnosed with sickle cell anaemia after birth. As a Christian, the mother chose not to have prenatal diagnosis in her next pregnancy. The second baby is a carrier. Her third baby is not a carrier. Video and audio clips in French.

• Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 01 >> All he had heard about sickle cell when he lived in Ghana was the belief that people with the condition usually die before they reach twenty-one.

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 12 >> She has heard that in Nigeria people celebrate if someone with sickle cell anaemia reaches their thirties.

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

First baby diagnosed with sickle cell anaemia after birth. As a Christian, the mother chose not to have prenatal diagnosis in her next pregnancy. The second baby is a carrier. Her third baby is not a carrier. Video and audio clips in French.

• Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 01 >> He knew of lots of awareness-raising in London. But people still need to take responsibility to read the information available.

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 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 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 >> 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.)

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 >> 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 >> 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.

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 >> 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 >> 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 >> 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 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

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 >> 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

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

Mother who knew she was a sickle cell carrier. Her partner believed he was not a carrier, but her third baby was born with sickle cell anaemia. In this pregnancy she had CVS; the baby is a carrier only.

• Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 14 >> She has a friend with a son with sickle cell anaemia. It's better to separate if both parents are carriers [Elle a une copine dont le fils a la drépan

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

• Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 01 >> Professional learning: He felt screening in pregnancy was just a routine part of care. He would never have thought of having screening otherwise.

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 05 >> Professional learning: She was willing to go along with whatever tests the NHS offered, but she did not know much about what she was being screened fo

The couple discovered in pregnancy they were both sickle cell carriers. She felt strongly as a Christian that she did not want any diagnostic tests, and has faith her baby will be healthy.

• Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Newborn >> Interview 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 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 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 >> 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 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 >> Newborn >> Interview 28 >> Professional learning: It helped to have a diagram to explain inheritance, and reassure her that her children will not have sickle cell anaemia, becau

Newborn screening showed the baby was a sickle cell carrier. The mother had been tested years ago and told she wasn't affected, but a new test showed she was a carrier.

• Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 06 >> Professional learning: She was very satisfied with the counselling she received. She had not realised what the risks were and it helped her decide to

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 05 >> Professional learning: When she was a child her family thought she had only a tiny amount of haemoglobin S which would disappear eventually.

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 19 >> Professional learning: Her husband believed he could not be a carrier because he was fit and strong. She trusted in him.

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 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 >> Antenatal sickle cell >> Interview 03 >> Professional learning: She takes an optimistic approach to risk, and just hopes things won't happen to her or her daughter. (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 >> 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 >> 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 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.

• 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.)

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: She needed to know more about the risks of stroke with sickle cell anaemia before making decisions about antenatal diagnosis.

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 >> 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 sickle cell >> Interview 19 >> Professional learning: She would consider ending a pregnancy, even though she comes from a strongly Christian family.

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 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

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 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 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.)

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

First baby diagnosed with sickle cell anaemia after birth. As a Christian, the mother chose not to have prenatal diagnosis in her next pregnancy. The second baby is a carrier. Her third baby is not a carrier. Video and audio clips in French.

• Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Newborn >> Interview 18 >> Professional learning: It was hard to support each other. She did not want her family's pity. [Ils l'ont trouvé difficile de se donner le soutien mutu

First baby diagnosed with sickle cell anaemia after birth. As a Christian, the mother chose not to have prenatal diagnosis in her next pregnancy. The second baby is a carrier. Her third baby is not a carrier. Video and audio clips in French.

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

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

Newborn screening showed the baby was a sickle cell carrier. The mother had been tested years ago and told she wasn't affected, but a new test showed she was a carrier.

• Pregnancy & children >> Screening for sickle cell and beta thalassaemia >> Antenatal sickle cell >> Interview 09 >> Professional learning: It would be better if the NHS could screen people before they become pregnant. (Read by an actor.)

Mother discovered she was a sickle cell carrier in pregnancy; the baby's father was reluctant to have screening. After the birth, she was shocked to discover the baby had sickle cell anaemia. Video and audio clips read by an actor.

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

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 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 >> Antenatal sickle cell >> Interview 01 >> Professional learning: His screening test result was delayed, so they had their counselling appointment without knowing if they were both carriers. Th

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 >> 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 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.