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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
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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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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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5-7 years since pregnancy ended
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Interview 37
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He worried that his wife was using the internet to search for positive stories.
Father of 2 children (1st and 3rd pregnancies, see also EAP36). 2nd pregnancy: 20-week scan detected anomalies. Sent for specialist scan, baby diagnosed with holoprosencephaly. Amniocentesis. Pregnancy ended by induction at 21 weeks. Genetic counselling. 4th pregnancy: 12-week scan anomalies detected - baby diagnosed with anencephaly. Pregnancy ended surgically at 13 weeks, his wife had gynaecological complications after the termination. Expecting another baby at time of interview.
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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3-4 years since pregnancy ended
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Interview 32
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The internet helped him think what questions he wanted to ask his doctors and also gave him something practical to do.
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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3-4 years since pregnancy ended
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Interview 05
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She used a medical website to find out more about Walker-Warburg syndrome which made her feel that she was something of an expert on the condition.
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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5-7 years since pregnancy ended
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Interview 23
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She realised that some websites only presented positive stories about babies born with abnormalities but felt they had given her food for thought.
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 07
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She used the internet to look up medical terminology but she found it didn't help her understand what was 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 38
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Her consultant looked up Fowler syndrome on the internet for her but only found a paragraph about it and then she went for genetic counselling.
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
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8+ years since pregnancy ended
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Interview 09
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She explains why the decision was much harder to make than she had expected.
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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8+ years since pregnancy ended
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Interview 28
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As a nurse she encounters women who have not been given information about how their pregnancies will end.
She has polycystic ovaries so took clomid. Experienced 3 miscarriages then conceived twins. 5th pregnancy: 11-week scan detected twins. Nuchal scan at 14 weeks indicated twins had Down's syndrome. 2 CVS tests done at specialist centre, Down's confirmed in one twin. Selective reducation of one twin by feticide at 15 weeks. Other twin continued to term.
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 used a US website to make contact with other women who had ended a pregnancy after a diagnosis of hypoplastic left heart syndrome.
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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1-2 years since pregnancy ended
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Interview 06
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She used to be in contact with other women by email every day but no longer needs that amount of support anymore.
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 35
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His wife's experience of ARC's email forum has been very positive but he found it more helpful to go to a support group meeting and hear other parents
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 34
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Feels that the support group was good for his wife but that men seem to find it much more difficult to communicate with each other about their emotion
His wife's 1st pregnancy: 12-week scan no problems detected. 20-week scan detected several anomalies. Specialist scan identified problems with brain development, later diagnosed as Dandy-Walker malfunction. Amniocentesis ruled out Edwards' syndrome. Specialist cardiac scan detected heart abnormalities. Pregnancy ended by feticide and induction at 22 weeks. Post mortem identified multiple abnormalities. He and his wife are hoping for another baby.
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