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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 knew that at 18 weeks pregnant she wouldn't be able to have a surgical termination but felt too shocked to ask questions about the birth.
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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8+ years since pregnancy ended
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Interview 25
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She knew nothing about ending a pregnancy and said she felt too frightened to ask questions about whether the baby would be born alive.
She has had 3 assisted pregnancies. 1st pregnancy in 1992, first scan was at 20-weeks, detected anomalies. CVS identified cystic fibrosis. Pregnancy ended by induction at 23 weeks. She has had 2 children since the termination.
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 04
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She felt her medical team were compassionate and supported her throughout her treatment.
She had an early termination, 2 miscarriages and a normal pregnancy. Her 5th pregnancy was ended by induction at 21 weeks - baby had Down's syndrome detected by amniocentesis. Since then 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 05
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She found the birth was less demanding physically than she had expected.
Her 2nd pregnancy: 20-week scan detected neural tube defect. Specialist scan confirmed encephalocoele. Pregnancy ended at 23 weeks by feticide and induction. Post mortem identified Walker-Warburg syndrome - a genetic abnormality. 3rd pregnancy: nuchal scan revealed baby had anomalies, and by 19 weeks scan showed hydrocephalus. Pregnancy ended at 20 weeks by induction. Walker-Warburg syndrome identified at post mortem. Both parents are carriers of recessive gene. 4th child born in 2004.
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 16
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She attributes her painful labour to her body and mind not being ready to lose the baby.
Her 4th pregnancy: experienced sickness during first trimester and felt unwell. Blood test at 16 weeks detected Down's syndrome. Amniocentesis confirmed Down's. Pregnancy ended by induction at 19 weeks. Following the termination she had a stillbirth. (In 2005 she had another baby.)
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 35
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He felt helpless as there was nothing he could do to help his wife as she gave birth.
Father of 1 child. 2nd pregnancy: wife felt unwell throughout pregnancy. Nuchal scan at 12-weeks arranged privately, advised to have CVS - no problems detected. 20-week scan found baby had heart problems. Specialist cardiac scan confirmed baby had multiple problems in heart, stomach and spleen. Pregnancy ended by feticide and induction at 22 weeks. Post mortem confirmed multiple abnormalities. He is undecided about whether he wants 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 30
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She found that gas and air provided enough pain relief for her on this occasion so that she was able to deliver her baby quite easily.
Her 2nd pregnancy: felt unwell and sick throughout pregnancy, some bleeding at 6 weeks. 11-week scan confirmed viability. 20-week scan detected heart abnormalities. Specialist scan identified tricuspid atresia and ventricular septal defect. Pregnancy ended by induction at 22 weeks. She has had another child since termination.
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 13
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She felt guilty that she hadn't said goodbye properly to her baby so contacted the bereavement midwife who arranged for her to see him once more.
Her 1st pregnancy: heavy bleeding in first trimester caused by ovarian haematoma. 20-week scan found insufficient amniotic fluid - possible premature rupture of membranes. Parents advised that baby could have lung damage/ breathing difficulties - uncertain prognosis. Pregnancy ended by induction at 23 weeks. Post mortem indicated that baby's development not affected by rupture of membranes. Twins born since termination.
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 04
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Her baby was born in the maternity ward and she feels glad that she had a chance to have a normal birth.
She had an early termination, 2 miscarriages and a normal pregnancy. Her 5th pregnancy was ended by induction at 21 weeks - baby had Down's syndrome detected by amniocentesis. Since then 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 10
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She wanted the baby to be born in a normal delivery suite with a midwife present and she found the birth went well and that she stayed calm.
Her 2nd pregnancy: 20-week scan indicated serious abnormalities. Amniocentesis and scans identified Patau's syndrome. Pregnancy was ended by induction (no feticide at her request) at 24 weeks. Since then 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 10
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Describes how she was pessimistic throughout her subsequent pregnancy but that after her son was safely delivered she realised what strain she had bee
Her 2nd pregnancy: 20-week scan indicated serious abnormalities. Amniocentesis and scans identified Patau's syndrome. Pregnancy was ended by induction (no feticide at her request) at 24 weeks. Since then she has had another baby.
Pregnancy & children
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Ending a pregnancy for fetal abnormality
>>
5-7 years since pregnancy ended
>>
Interview 10
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She wanted the baby to be born in a normal delivery suite with a midwife present and she found the birth went well and that she stayed calm.
Her 2nd pregnancy: 20-week scan indicated serious abnormalities. Amniocentesis and scans identified Patau's syndrome. Pregnancy was ended by induction (no feticide at her request) at 24 weeks. Since then she has had another baby.
Pregnancy & children
>>
Ending a pregnancy for fetal abnormality
>>
5-7 years since pregnancy ended
>>
Interview 10
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She felt pressurised to make decisions before she was ready and wanted more time to decide how she wanted her baby to be born.
Her 2nd pregnancy: 20-week scan indicated serious abnormalities. Amniocentesis and scans identified Patau's syndrome. Pregnancy was ended by induction (no feticide at her request) at 24 weeks. Since then 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 15
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She wanted to end the pregnancy rather than let her baby go to term because she didn't want him to suffer more than was necessary.
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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5-7 years since pregnancy ended
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Interview 26
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Because she was just under 14 weeks pregnant she chose to end her pregnancy surgically and does not regret her decision.
She had 2 normal pregnancies, despite endometriosis, before 3rd pregnancy. 3rd pregnancy: 12-week scan detected problems with baby's heart and kidneys. Specialist scans - cardiac scan confirmed baby's heart undeveloped. CVS found no genetic cause. Pregnancy ended surgically at 14 weeks. She experienced gynaecological complications after 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 36
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She was treated in a gynaecology unit and missed being cared for by a midwife or having someone to talk to about her baby.
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.
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 willing to go through labour because she felt it would be better for her and more natural for the baby.
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
>>
Ending a pregnancy for fetal abnormality
>>
3-4 years since pregnancy ended
>>
Interview 04
>>
She felt her medical team were compassionate and supported her throughout her treatment.
She had an early termination, 2 miscarriages and a normal pregnancy. Her 5th pregnancy was ended by induction at 21 weeks - baby had Down's syndrome detected by amniocentesis. Since then she has had another baby.
Pregnancy & children
>>
Ending a pregnancy for fetal abnormality
>>
1-2 years since pregnancy ended
>>
Interview 13
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She worried that the pills would hurt her baby and wished health professionals had shown more concern about the baby's well being.
Her 1st pregnancy: heavy bleeding in first trimester caused by ovarian haematoma. 20-week scan found insufficient amniotic fluid - possible premature rupture of membranes. Parents advised that baby could have lung damage/ breathing difficulties - uncertain prognosis. Pregnancy ended by induction at 23 weeks. Post mortem indicated that baby's development not affected by rupture of membranes. Twins born since termination.
Pregnancy & children
>>
Ending a pregnancy for fetal abnormality
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3-4 years since pregnancy ended
>>
Interview 19
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He had been asked to leave before his wife had the injection but he wished he could have remained in the room to comfort her.
His wife's 2nd pregnancy: 20-week scan detected neural tube defect. Specialist scan confirmed encephalocoele. Pregnancy ended at 23 weeks by feticide and induction. Post mortem identified Walker-Warburg syndrome - a genetic abnormality. 3rd pregnancy: nuchal scan revealed baby had anomalies, and by 19 weeks scan showed hydrocephalus. Pregnancy ended at 20 weeks by induction. Walker-Warburg syndrome identified at post mortem. Both parents (see EAP05) carriers of recessive gene. 4th child born in 2004.
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 couldn't stop reading the ARC (Antenatal Results and Choices) booklet about ending a pregnancy even though what she read shocked her.
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
>>
5-7 years since pregnancy ended
>>
Interview 10
>>
She felt pressurised to make decisions before she was ready and wanted more time to decide how she wanted her baby to be born.
Her 2nd pregnancy: 20-week scan indicated serious abnormalities. Amniocentesis and scans identified Patau's syndrome. Pregnancy was ended by induction (no feticide at her request) at 24 weeks. Since then she has had another baby.
Pregnancy & children
>>
Ending a pregnancy for fetal abnormality
>>
1-2 years since pregnancy ended
>>
Interview 02
>>
She knew that at 18 weeks pregnant she wouldn't be able to have a surgical termination but felt too shocked to ask questions about the birth.
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
>>
Ending a pregnancy for fetal abnormality
>>
1-2 years since pregnancy ended
>>
Interview 35
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Describes how he responds when people ask him questions about his family.
Father of 1 child. 2nd pregnancy: wife felt unwell throughout pregnancy. Nuchal scan at 12-weeks arranged privately, advised to have CVS - no problems detected. 20-week scan found baby had heart problems. Specialist cardiac scan confirmed baby had multiple problems in heart, stomach and spleen. Pregnancy ended by feticide and induction at 22 weeks. Post mortem confirmed multiple abnormalities. He is undecided about whether he wants another baby.
Pregnancy & children
>>
Ending a pregnancy for fetal abnormality
>>
1-2 years since pregnancy ended
>>
Interview 12
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She felt unprepared for the amount of bleeding she experienced after leaving hospital and says it was hard to avoid the maternity section of the super
Her 1st pregnancy: 20-week scan indicated anomalies. Detailed scanning showed the baby had severe form of spina bifida. The pregnancy ended by induction at 20 weeks. She has polycystic ovarian syndrome and was taking folic acid before the pregnancy, she now takes a larger dose. One miscarriage since the termination.
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 30
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Explains that it was difficult to leave the baby behind and then deal with the physical after effects of having had a baby.
Her 2nd pregnancy: felt unwell and sick throughout pregnancy, some bleeding at 6 weeks. 11-week scan confirmed viability. 20-week scan detected heart abnormalities. Specialist scan identified tricuspid atresia and ventricular septal defect. Pregnancy ended by induction at 22 weeks. She has had another child since termination.
Topic
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Ending a pregnancy for fetal abnormality
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Going through labour and birth
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Going through labour and birth
Going through labour and birth
Pregnancy & children
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Ending a pregnancy for fetal abnormality
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Going through labour and birth
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Going through labour and birth
Going through labour and birth
Pregnancy & children
>>
Ending a pregnancy for fetal abnormality
>>
5-7 years since pregnancy ended
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Interview 29
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Describes her labour and epidural neither of which went as well as she had hoped.
Their 2nd pregnancy: mother had gestational diabetes so had regular blood tests and scans throughout pregnancy. Amniocentesis at 16 weeks was clear. Scan at 30 weeks indicated neural tube defect. Detailed scans indentified alobar holoprosencephaly. Pregnancy was ended by feticide and induction at 31 weeks. Parents declined post mortem. They have had another baby since the termination.
Pregnancy & children
>>
Ending a pregnancy for fetal abnormality
>>
1-2 years since pregnancy ended
>>
Interview 02
>>
She knew that at 18 weeks pregnant she wouldn't be able to have a surgical termination but felt too shocked to ask questions about the birth.
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.
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