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Pregnancy & children
Ending a pregnancy for fetal abnormality
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The baby and the diagnosis :
Feelings about the pregnancy
Early scans and blood tests
Diagnostic tests - amnio and CVS
The 18-20 week scan and further tests
Understanding the baby's diagnosis
Deciding to end the pregnancy :
Looking for information and support
Ending the pregnancy for the baby's sake
Ending the pregnancy for family & personal reasons
Finding out how the pregnancy will end
The impact of the decision
Ending the pregnancy :
Signing the consent form
Ending the pregnancy surgically
Ending the pregnancy by induction
Going through labour and birth
Deciding whether to see, hold and name the baby
Photographs and other mementoes of the baby
Treatment, care and communication
Losing the baby :
Leaving hospital and going home
Deciding whether to have a post-mortem
Saying goodbye to the baby - sevices & funerals
Coping with bereavement - women's experiences
Coping with bereavement - men's experiences
The effects of ending a pregnancy :
Counselling and other kinds of support
Support groups
Deciding whether to have another baby
Men's ideas about their role in ending a pregnancy
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Ending a pregnancy for fetal abnormality
Subject index
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Pregnancy & children
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Ending a pregnancy for fetal abnormality
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1-2 years since pregnancy ended
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Interview 02
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She was pleased to have conceived so easily but asked her doctor for advice in case her epilepsy medication would affect the baby (her baby had spina
Her 1st pregnancy. Spina bifida detected by AFP test and scan at 16 weeks. She and partner decided to seek second opinion privately which confirmed diagnosis of spina bifida. Pregnancy ended by induction at 17 weeks, followed by post mortem. Mother has epilepsy and took extra folic acid during pregnancy. Since interview she has had another baby.
Pregnancy & children
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Ending a pregnancy for fetal abnormality
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3-4 years since pregnancy ended
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Interview 21
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She was not expecting to have to make a decision about which test to chose (she chose CVS) and describes how her feelings about these tests changed on
She has had 2 children (1st and 3rd pregnancies), 3 miscarriages and ended 1 pregnancy. 4th pregnancy: had some bleeding, arranged first scan privately at 8 weeks. Felt unsure of viability of pregnancy, had 12 week scan, no anomalies found. Arranged nuchal scan and blood tests privately and several anomalies were detected. CVS identified Edwards' syndrome. Pregnancy ended surgically at 15 weeks. She has had 2 miscarriages since the termination.
Pregnancy & children
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Ending a pregnancy for fetal abnormality
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5-7 years since pregnancy ended
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Interview 15
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She describes having an amnio and says that the procedure went well and that she experienced little discomfort at the time or soreness afterwards.
Her 1st pregnancy: Triple test at 16 weeks indicated baby was at high risk of having Edwards' syndrome. Amniocentesis confirmed Edwards' syndrome. Pregnancy ended by induction at 19 weeks. She and her husband agreed to post mortem. She has since had another two babies.
Pregnancy & children
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Ending a pregnancy for fetal abnormality
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8+ years since pregnancy ended
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Interview 20
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She has never worried about amnios because she has always been cared for by experienced staff in a large teaching hospital.
She has had two children (1st and 5th pregnancies), 2 miscarriages and 1 stillbirth. She has ended 2 pregnancies. 2nd pregnancy: anomalies detected at dating scan, so she was scanned regularly. By 18 weeks multiple abnormalities evident- sent for amniocentesis. Pregnancy ended by induction. Post mortem identified multiple pterygium syndrome - a genetic disorder caused by both parents having recessive gene. 4th pregnancy: IVF treatment, scanned at 10 weeks and anomalies detected- sent for amniocentesis. Pregnancy ended at 17 weeks. Amnio identified Down's syndrome.
Pregnancy & children
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Ending a pregnancy for fetal abnormality
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5-7 years since pregnancy ended
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Interview 08
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Describes how the consultant encouraged her to look at the baby on the screen as he was doing the amnio.
Her 2nd pregnancy: felt unwell throughout pregnancy, AFP test at 16 weeks indicated that baby might have Down's syndrome, later confirmed by amniocentesis. Pregnancy was ended by induction at 21 weeks. She felt insufficiently prepared or informed about baby's post mortem.
Pregnancy & children
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Ending a pregnancy for fetal abnormality
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8+ years since pregnancy ended
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Interview 09
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She wanted her baby to have a post mortem to help find a cure for hypoplastic left heart syndrome.
Her 2nd pregnancy: 20-week scan found baby had anomalies. Preliminary diagnosis after specialist cardiac scan was that baby had serious heart defects. Pregnancy ended by induction at 24 weeks. Post mortem revealed baby had hypoplastic left heart syndrome and an unbalanced chromosomal translocation (Robertsonian translocation of 13 and 14). Genetic counselling found that mother and her mother are carriers of a chromosomal disorder or translocation of the chromosomes. Since termination she has had another baby.
Pregnancy & children
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Ending a pregnancy for fetal abnormality
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5-7 years since pregnancy ended
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Interview 27
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Describes how happy she was about her next pregnancy and how it went well from the start.
Her 2nd pregnancy: she felt unwell throughout pregnancy. 12-week scan confirmed pregnancy viable. Amniocentesis identified Down's syndrome. Pregnancy ended by induction at 19 weeks. She had another baby 2 years later.
Pregnancy & children
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Ending a pregnancy for fetal abnormality
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5-7 years since pregnancy ended
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Interview 36
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Having ended two pregnancies because of neural tube defects she is pregnant again and explains her motivation and anxieties.
Mother of 2 children (1st and 3rd pregnancies). 2nd pregnancy: 20-week scan detected anomalies. Sent for specialist scan, baby diagnosed with holoprosencephaly. Amniocentesis. Pregnancy ended by induction at 21 weeks. She experienced post-natal depression. Sent for genetic counselling. 4th pregnancy: 12-week scan anomalies detected - baby diagnosed with anencephaly. Pregnancy ended surgically at 13 weeks. She had gynaecological problems following termination. She was pregnant at time of interview.
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