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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 :
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Deciding whether to have another baby
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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 had never had a baby before and didn't know when she was in labour and found herself alone when the baby was born.
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 32
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Says he didn't know what to do with the diagnosis initially and describes how he and his wife eventually reached their decision.
His wife's 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. Since termination he and his wife (EAP07) have 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 wife didn't mind seeing their baby wrapped up in a shawl but thought it was inappropriate to put her in a pink dress.
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 19
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He recognises he is being illogical about the injection but he saw it as a 'dreadful intrusion'.
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 19
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He found it difficult when a consultant saw his baby on the scanner and described her as 'interesting'.
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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8+ years since pregnancy ended
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Interview 01
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She had wanted one photo as a record but did not like it when staff took a roll of photographs of the baby.
Mother of 4 children. She became pregnant for 5th time in 1993. Amniocentesis detected the baby had Down's syndrome. The pregnancy was ended by induction at 19 weeks.
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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All the specialists she met were professional but she preferred the care of a woman consultant because she was thoughtful and approachable.
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 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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3-4 years since pregnancy ended
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Interview 24
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Describes the factors that led her towards the decision to end the pregnancy (her baby had lower limb deficiencies).
Mother of 1 child, she had a miscarriage in 1997. She has a heart condition and takes warfarin (heparin during pregnancy). 3rd pregnancy: 7-week scan confirmed pregnancy viable. 12 week scan no problems found. Nuchal scan at 13 weeks found baby had shortened femur, no tibia or fibular on right leg. Specialist scans confirmed lower limb deficiencies. Pregnancy ended at 17 weeks by induction.
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 word 'feticide' very difficult to accept and preferred to say 'putting the baby to sleep'.
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 31
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She had the impression that she should see her baby but found she was shocked by aspects of her appearance and is still unsure whether it was the righ
Mother's 1st pregnancy (father's 4th - he has 3 children from previous marriage). IVF pregnancy, some bleeding, 8-week dating scan at IVF clinic. 12-week scan no problems found. 20-week scan detected choroid plexus cysts (soft markers for Edwards' syndrome). Specialist cardiac scan indicated heart defects- sent for amniocentesis. Pregnancy ended at 22 weeks by feticide and induction. They have 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 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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1-2 years since pregnancy ended
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Interview 38
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She got upset when her aunts took photographs of her baby to send to their families.
Mother of 1 child, married to her first cousin. 2nd pregnancy: 12-week scan normal. 20-week scan detected anomalies in the baby's brain. Specialist scan confirmed multiple abnormalities. Pregnancy ended at 20 weeks by induction. Post mortem indicated baby had proliferative vasculopathy with hydrocephaly (Fowler syndrome). Sent for genetic counselling, established she and her husband carriers of gene responsible for syndrome. She was pregnant at time of interview.
Pregnancy & children
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Ending a pregnancy for fetal abnormality
>>
3-4 years since pregnancy ended
>>
Interview 31
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She was disappointed to be assigned a midwife who didn't seem to know how to reassure or care for her.
Mother's 1st pregnancy (father's 4th - he has 3 children from previous marriage). IVF pregnancy, some bleeding, 8-week dating scan at IVF clinic. 12-week scan no problems found. 20-week scan detected choroid plexus cysts (soft markers for Edwards' syndrome). Specialist cardiac scan indicated heart defects- sent for amniocentesis. Pregnancy ended at 22 weeks by feticide and induction. They have had another baby since termination.
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