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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
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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5-7 years since pregnancy ended
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Interview 08
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She took into account the effect she believed her baby's Down's syndrome would have on her, her marriage and the whole family.
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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8+ years since pregnancy ended
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Interview 20
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She has ended 3 pregnancies because of a genetic disorder and feels people should be more realistic about the strain of caring for a disabled child.
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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1-2 years since pregnancy ended
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Interview 02
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She knew that at 18 weeks pregnant she wouldn't be able to have a surgical termination but felt too shocked to ask questions about the birth.
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 21
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She couldn't stop reading the ARC (Antenatal Results and Choices) booklet about ending a pregnancy even though what she read shocked her.
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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5-7 years since pregnancy ended
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Interview 10
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She felt pressurised to make decisions before she was ready and wanted more time to decide how she wanted her baby to be born.
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 05
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Feels sad that she found herself in a position of having to make such a difficult decision but knows she made the right decision for her though others
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 04
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She felt guilty for making the decision and struggled with her conscience about it.
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 36
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Her Catholic faith affected how she felt about her decision and it took more than a year for her to accept what happened to 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 21
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She was booked into a day surgery unit at the last minute because she wanted to avoid going through labour but has since had second thoughts about her
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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3-4 years since pregnancy ended
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Interview 04
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She felt her medical team were compassionate and supported her throughout her treatment.
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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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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5-7 years since pregnancy ended
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Interview 23
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Even though she had given birth twice before she found this labour was more physically and emotionally draining.
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 13
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She was promised support during labour and delivery but felt that she did not receive it.
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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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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5-7 years since pregnancy ended
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Interview 27
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The photos of her baby are all she's got and even though they show some facial abnormalities she is glad to have them.
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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3-4 years since pregnancy ended
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Interview 30
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Explains how it helped her in the days after the termination to keep a diary of her feelings about the baby.
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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3-4 years since pregnancy ended
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Interview 05
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She had chosen not to see her baby but knowing that a photo had been taken she became quite desperate to see what she looked like and was upset.
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 15
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Her husband could see she was suffering and found it difficult not being able to do anything to help her.
Her 1st pregnancy: Triple test at 16 weeks indicated baby was at high risk of having Edwards' syndrome. Amniocentesis confirmed Edwards' syndrome. Pregnancy ended by induction at 19 weeks. She and her husband agreed to post mortem. She has since had another two babies.
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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Explains that her hospital offered bereavement counselling routinely and says that she appreciated having appointments on her own.
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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5-7 years since pregnancy ended
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Interview 22
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Everyone thought she was alright but she decided to have bereavement counselling for 10 weeks which helped.
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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She became depressed for a while after the termination and so consulted her GP.
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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3-4 years since pregnancy ended
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Interview 21
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She tried to be normal for the sake of her children but eventually saw her GP and was offered counselling.
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 34
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He didn't want to be given advice and was offered the chance to talk things through with someone at work.
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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5-7 years since pregnancy ended
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Interview 36
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She couldn't see anyone or go out much for several months so her GP advised her to take anti-depressants and she also had counselling.
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 18
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She and her partner found the support of friends and family and several visits from a chaplain they liked was enough for them.
Her 1st pregnancy (through IVF). 6-week scan at fertility clinic. Had nuchal scan done privately at 12 weeks. Baby found to have anencephaly. Pregnancy ended surgically at 12 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 07
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At first she didn't want to talk about her baby or what happened to anyone else and felt that a support group meeting would only have upset 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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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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3-4 years since pregnancy ended
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Interview 24
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She found ARC (Antenatal Results and Choices) helped her at several stages particularly in the beginning as she was making the decision.
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 04
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ARC (Antenatal Results and Choices) gave her people to talk to when her husband didn't want to talk and helped her keep the baby's memory alive.
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 21
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[About her partner] 'He did try hard... he's very good at talking about things'.
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 06
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Neither of them feel ready to have another baby because they haven't yet come to terms with the termination.
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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5-7 years since pregnancy ended
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Interview 36
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She found herself getting depressed after her second baby was born at a time when she should have been feeling happy.
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 11
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Describes how difficult she found her second pregnancy and that her new baby often makes her think of her first baby.
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 22
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Looking back she realises that she put her husband under strain because she was so determined to get pregnant again after the termination.
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 29
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Says that having another baby as well as the passage of time helped him and his wife recover from the termination.
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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5-7 years since pregnancy ended
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Interview 36
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[About her partner] 'With him I felt safe because... this was our loss together'.
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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8+ years since pregnancy ended
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Interview 28
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She felt she shouldn't grieve for the baby she had lost when she had another healthy baby alive and well and she found ARC (Antenatal Results and Choi
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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Ending a pregnancy for fetal abnormality
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Coping with bereavement - women's experiences
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Coping with bereavement - women's experiences
Coping with bereavement - women's experiences
Pregnancy & children
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Ending a pregnancy for fetal abnormality
>>
Coping with bereavement - women's experiences
>>
Coping with bereavement - women's experiences
Coping with bereavement - women's experiences
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Ending a pregnancy for fetal abnormality
>>
Coping with bereavement - men's experiences
>>
Coping with bereavement - men's experiences
Coping with bereavement - men's experiences
Pregnancy & children
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Ending a pregnancy for fetal abnormality
>>
Coping with bereavement - men's experiences
>>
Coping with bereavement - men's experiences
Coping with bereavement - men's experiences
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