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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
Clip
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 07
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Describes her realisation at the 20-week scan that something was very wrong with her baby.
Her 3rd pregnancy: 20-week scan detected anomalies - baby's kidneys and stomach couldn't be seen. Specialist scan revealed baby had multiple abnormalities; parents agreed to amniocentesis which confirmed baby's problems were not inherited. Pregnancy ended at 22 weeks by induction. She has since 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 did not expect to find out at the 20-week scan that there was anything wrong with the baby (she had heart problems).
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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1-2 years since pregnancy ended
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Interview 14
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She contrasts her feelings about the pregnancy at the dating scan when she was full of hope and then at the specialist scan when she was confronted by
Her 2nd pregnancy: nuchal scan arranged privately - showed baby was small, scan and blood tests found anomalies. Triple test - no problems found. Detailed scan and amniocentesis done together. Scan detected exomphalos. Amnio identified Edwards' syndrome. Pregnancy ended by induction at 20 weeks. She has had another baby since 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 10
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She and her family went to the 20-week scan and were asked to return in two day's time when she was told the baby had a diaphragmatic hernia (later di
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 36
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She took her eldest child along with her to the 20-week scan but was told that the baby she was expecting had a serious brain abnormality (later diagn
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 12
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Says that because all the earlier tests had been fine her mind had closed to the possibility that anything could be wrong with her baby who was diagno
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 19
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He describes the tense atmosphere at the 20-week scan and how difficult it was having to wait for more scans before getting a diagnosis.
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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5-7 years since pregnancy ended
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Interview 23
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She experienced a kind of physical shock when she was told her baby had problems with his heart (he had hypoplastic left heart syndrome) and that she
She has 3 children (1st, 3rd and 4th pregnancies), and ended 1 pregnancy. 2nd pregnancy: everything seemed fine until 20-week scan which found heart defects. Specialist cardiac scan identified hypoplastic left heart syndrome. Pregnancy ended by induction at 21 weeks. Parents agreed to post mortem. Since then she has had two children.
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 and her husband felt paralysed by shock when they heard that their baby had Edwards' syndrome.
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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1-2 years since pregnancy ended
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Interview 14
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She struggled to absorb all the information about her baby's diagnosis and explains she needed more time to think it through.
Her 2nd pregnancy: nuchal scan arranged privately - showed baby was small, scan and blood tests found anomalies. Triple test - no problems found. Detailed scan and amniocentesis done together. Scan detected exomphalos. Amnio identified Edwards' syndrome. Pregnancy ended by induction at 20 weeks. She has had another baby 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 12
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Explains that she found it easier than her partner to understand the baby's diagnosis because of her professional training and work experience.
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 07
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She says that the phrase 'the outlook is very poor' was repeated and describes how it helped her accept the baby's condition was extremely serious.
Her 3rd pregnancy: 20-week scan detected anomalies - baby's kidneys and stomach couldn't be seen. Specialist scan revealed baby had multiple abnormalities; parents agreed to amniocentesis which confirmed baby's problems were not inherited. Pregnancy ended at 22 weeks by induction. She has since 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
>>
Interview 05
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She wondered with hindsight whether the consultants had given her an entirely balanced presentation of her baby's problems.
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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1-2 years since pregnancy ended
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Interview 06
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They appreciated the fact that the consultant explained everything to them in everyday language rather than 'doctor talk'.
Their 2nd pregnancy: 20-week scan showed baby seemed small for his dates. Further specialist scans at 28 and 32 weeks showed baby's head was small. Mother also had amniocentesis and MRI scan. Baby diagnosed with microcephaly. Pregnancy ended at 34 weeks by feticide and induction.
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 06
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They appreciated the friendly atmosphere at the specialist hospital clinic and trusted the staff.
Their 2nd pregnancy: 20-week scan showed baby seemed small for his dates. Further specialist scans at 28 and 32 weeks showed baby's head was small. Mother also had amniocentesis and MRI scan. Baby diagnosed with microcephaly. Pregnancy ended at 34 weeks by feticide and induction.
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 12
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Describes the room she and her partner were sent to before they were told the baby's diagnosis and said she would have liked an ARC (Antenatal Results
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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1-2 years since pregnancy ended
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Interview 17
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Explains that as a mental health professional she had expected to be treated with empathy and understanding but felt that had not happened in the spec
After birth of first child she had 3 miscarriages. 4th pregnancy did not 'feel right'. Nuchal scan arranged privately, baby was small for dates. Had two more scans to investigate baby's size and due date. Specialist scan at 21 weeks, then heart scan and then amniocentesis. Doctors suspected diaphragmatic hernia but amnio identified chromosomal abnormality (Wolf Hirschhorn syndrome). Pregnancy was ended by feticide and induction at 24 weeks. (Since the interview she has 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 and his partner appreciated the consultant being direct and open with them about the baby's diagnosis.
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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5-7 years since pregnancy ended
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Interview 23
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She found hospital staff very compassionate and helpful because they gave her plenty of information and then answered more questions later.
She has 3 children (1st, 3rd and 4th pregnancies), and ended 1 pregnancy. 2nd pregnancy: everything seemed fine until 20-week scan which found heart defects. Specialist cardiac scan identified hypoplastic left heart syndrome. Pregnancy ended by induction at 21 weeks. Parents agreed to post mortem. Since then she has had two children.
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 22
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When she was told her baby's condition (Edwards' syndrome) was 'incompatible with life' she felt there was no choice but to end the pregnancy.
Her 1st pregnancy: some bleeding and sickness, scan at 7 weeks confirmed pregnancy. 12-week scan normal. Triple test at 19 weeks, found raised AFP levels. 20-week scan identified hole in baby's heart and shortened limbs. Specialist scan found 2 holes in heart and abnormalities in limbs, bowel and brain- sent for amniocentesis. Pregnancy ended by induction at 21 weeks. She has had another baby since 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 27
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Describes how she heard the results of the amnio on the phone and that it was difficult to cope because she was on her own with the children.
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.
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