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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
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Deciding whether to have another baby
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Ending a pregnancy for fetal abnormality
Subject index
Topic
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Ending a pregnancy for fetal abnormality
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Early scans and blood tests
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Early scans and blood tests
Early scans and blood tests
Pregnancy & children
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Ending a pregnancy for fetal abnormality
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Early scans and blood tests
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Early scans and blood tests
Early scans and blood tests
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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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She dreads scans because of her previous experiences.
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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5-7 years since pregnancy ended
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Interview 36
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Having ended two pregnancies because the babies had neural tube defects she is pregnant again but always dreads having scans.
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 07
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She had no painkilling injection before the amnio and was told to expect 'mild discomfort' which she felt was rather misleading.
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
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Interview 31
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She was starting to relax when she went for the 20-week scan with her mother but then the sonographer saw signs of Edwards' syndrome.
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 34
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The sonographer told them the baby's femur (thigh bones) seemed quite short but didn't explain why that might be significant for their baby.
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.
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 was very much affected by seeing his baby's face on a 3D scanner and says he can remember her in detail.
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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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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5-7 years since pregnancy ended
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Interview 29
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They had several scans late in the pregnancy because of her gestational diabetes and they were distraught to discover at 30 weeks that the baby had se
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
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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 11
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The sonographers at her local hospital scanned her baby and spoke to each other about what they could see using terms she didn't fully understand.
Her 1st pregnancy: experienced hyperemesis during pregnancy. Triple test at 16 weeks showed high AFP reading. Sent for specialist scan which found baby had neural tube defect confirmed by amniocentesis. Pregnancy was ended by induction at 21 weeks. Post mortem indicated Arnold-Chiari malformation. 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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She felt isolated and alone even though there were about 9 medical staff in the room watching her.
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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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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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.
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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Her pregnancy was planned and she felt happy and very well until after her first scan at 15 weeks (her baby had 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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3-4 years since pregnancy ended
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Interview 30
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She felt extremely sick in her pregnancy (her baby had ventricular septal defects) and thought something was wrong even though friends said it meant t
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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8+ years since pregnancy ended
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Interview 28
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She bursts into tears when she finds out she is expecting another set of twins because she feels she cannot cope (one of the twins had Down's syndrome
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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1-2 years since pregnancy ended
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Interview 34
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No one could explain why his wife's blood test showed she was not pregnant yet subsequently they saw the baby on the scanner.
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.
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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Her baby looked structurally fine on the 12-week scan and she and her partner decided to tell everyone about the pregnancy (an AFP test shortly afterw
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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1-2 years since pregnancy ended
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Interview 12
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She and her partner paid to have extra photographs of the baby's 12-week scan.
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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5-7 years since pregnancy ended
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Interview 26
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Her mother has all the scan photos of her grandchildren up on her bedroom wall and her other children love seeing them.
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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1-2 years since pregnancy ended
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Interview 34
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He feels happy at seeing his baby for the first time on the screen and takes scan pictures to work to show his colleagues.
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.
Pregnancy & children
>>
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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She felt anxious and uncomfortable during her first scans.
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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8+ years since pregnancy ended
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Interview 28
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The nuchal fold test showed that both her twin babies could have Down's syndrome.
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
>>
Ending a pregnancy for fetal abnormality
>>
5-7 years since pregnancy ended
>>
Interview 36
>>
Having ended two pregnancies because the babies had neural tube defects she is pregnant again but always dreads having scans.
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
>>
Ending a pregnancy for fetal abnormality
>>
1-2 years since pregnancy ended
>>
Interview 13
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Explains what she understood different scans were for.
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
>>
3-4 years since pregnancy ended
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Interview 24
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She dreads scans because of her previous experiences.
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.
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