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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
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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 13
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Describes feeling angry to be asked why she hadn't attended an antenatal appointment after having let her local surgery know about the termination.
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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8+ years since pregnancy ended
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Interview 09
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Her immediate reaction on finding out she needed to go through labour was not to end the pregnancy.
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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1-2 years since pregnancy ended
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Interview 11
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She wished someone had explained how her pregnancy would end because it was too difficult a question to ask.
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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5-7 years since pregnancy ended
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Interview 29
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She felt worried about her baby's possible disfigurement and wasn't sure at first whether or not to look at her.
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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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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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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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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5-7 years since pregnancy ended
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Interview 08
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She didn't 'gel' with her hospital midwife but found the community midwife helped both her and her husband.
Her 2nd pregnancy: felt unwell throughout pregnancy, AFP test at 16 weeks indicated that baby might have Down's syndrome, later confirmed by amniocentesis. Pregnancy was ended by induction at 21 weeks. She felt insufficiently prepared or informed about baby's post mortem.
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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Feels she was well looked after by a nurse on a gynaecology ward and was able to self-administer morphine and gave birth quite easily.
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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3-4 years since pregnancy ended
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Interview 04
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Describes how she held her baby all night and talked to her about what had happened and why.
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 04
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She was touched to have been treated so considerately by the screening coordinator and felt that all her care had been good.
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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Explains how her baby's funeral helped relieve her feelings, and that she valued the care taken by the funeral directors.
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 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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3-4 years since pregnancy ended
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Interview 05
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She chose to take morphine not realising that her baby was about to be born and she regretted it because the morphine made her sick and sleepy.
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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3-4 years since pregnancy ended
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Interview 05
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Explains how when she ended her first pregnancy she decided not to see or hold the baby.
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 05
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Describes seeing her second baby and how even though the baby didn't look as she hoped, the decision had been right for her.
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 17
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Explains why she decided not to hold her baby after she was born.
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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3-4 years since pregnancy ended
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Interview 07
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She valued the care she received from everyone on her medical team and felt the midwives took a personal interest in her.
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 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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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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5-7 years since pregnancy ended
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Interview 36
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She appreciated the way the hospital chaplain helped her deal with what she had done and that he blessed 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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3-4 years since pregnancy ended
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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.
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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Describes the contradictory thoughts that went through her mind as she decides what to do.
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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8+ years since pregnancy ended
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Interview 28
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She explains why she had several CVS tests done and how anxious she felt at the time.
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.
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