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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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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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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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1-2 years since pregnancy ended
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Interview 02
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All the specialists she met were professional but she preferred the care of a woman consultant because she was thoughtful and approachable.
Her 1st pregnancy. Spina bifida detected by AFP test and scan at 16 weeks. She and partner decided to seek second opinion privately which confirmed diagnosis of spina bifida. Pregnancy ended by induction at 17 weeks, followed by post mortem. Mother has epilepsy and took extra folic acid during pregnancy. Since interview she has had another baby.
Pregnancy & children
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Ending a pregnancy for fetal abnormality
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5-7 years since pregnancy ended
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Interview 26
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Described how upset she felt to be treated in a matter-of-fact way when she returned to hospital for two D & Cs after a surgical termination.
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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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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3-4 years since pregnancy ended
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Interview 05
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She wondered with hindsight whether the consultants had given her an entirely balanced presentation of her baby's problems.
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 06
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They appreciated the fact that the consultant explained everything to them in everyday language rather than 'doctor talk'.
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 06
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They appreciated the friendly atmosphere at the specialist hospital clinic and trusted the staff.
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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He and his partner appreciated the consultant being direct and open with them about the baby's diagnosis.
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 20
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She has never worried about amnios because she has always been cared for by experienced staff in a large teaching hospital.
She has had two children (1st and 5th pregnancies), 2 miscarriages and 1 stillbirth. She has ended 2 pregnancies. 2nd pregnancy: anomalies detected at dating scan, so she was scanned regularly. By 18 weeks multiple abnormalities evident- sent for amniocentesis. Pregnancy ended by induction. Post mortem identified multiple pterygium syndrome - a genetic disorder caused by both parents having recessive gene. 4th pregnancy: IVF treatment, scanned at 10 weeks and anomalies detected- sent for amniocentesis. Pregnancy ended at 17 weeks. Amnio identified Down's syndrome.
Pregnancy & children
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Ending a pregnancy for fetal abnormality
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5-7 years since pregnancy ended
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Interview 29
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Describes her labour and epidural neither of which went as well as she had hoped.
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 24
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Describes the factors that led her towards the decision to end the pregnancy (her baby had lower limb deficiencies).
Mother of 1 child, she had a miscarriage in 1997. She has a heart condition and takes warfarin (heparin during pregnancy). 3rd pregnancy: 7-week scan confirmed pregnancy viable. 12 week scan no problems found. Nuchal scan at 13 weeks found baby had shortened femur, no tibia or fibular on right leg. Specialist scans confirmed lower limb deficiencies. Pregnancy ended at 17 weeks by induction.
Pregnancy & children
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Ending a pregnancy for fetal abnormality
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3-4 years since pregnancy ended
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Interview 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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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 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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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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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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1-2 years since pregnancy ended
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Interview 06
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They found it helpful that staff at the specialist hospital understood them and the difficulties they were facing.
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 26
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Described how upset she felt to be treated in a matter-of-fact way when she returned to hospital for two D & Cs after a surgical termination.
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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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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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
>>
Ending a pregnancy for fetal abnormality
>>
8+ years since pregnancy ended
>>
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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5-7 years since pregnancy ended
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Interview 22
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Decided she wanted to see her baby after she had left hospital and felt much happier once she had seen him though she didn't feel able to pick him up.
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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1-2 years since pregnancy ended
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Interview 18
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Though she had a surgical termination she was cared for in a maternity ward where she felt able to ask questions about the procedure.
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 16
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Describes how she instinctively wanted to hold and touch her baby and explains how she and her husband kept him with them overnight and had him blesse
Her 4th pregnancy: experienced sickness during first trimester and felt unwell. Blood test at 16 weeks detected Down's syndrome. Amniocentesis confirmed Down's. Pregnancy ended by induction at 19 weeks. Following the termination she had a stillbirth. (In 2005 she had another baby.)
Pregnancy & children
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Ending a pregnancy for fetal abnormality
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3-4 years since pregnancy ended
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Interview 32
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He was humbled by the special funeral service for babies and feels that the ritual of saying goodbye is important.
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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5-7 years since pregnancy ended
>>
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
>>
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
>>
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
>>
Ending a pregnancy for fetal abnormality
>>
5-7 years since pregnancy ended
>>
Interview 22
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Decided she wanted to see her baby after she had left hospital and felt much happier once she had seen him though she didn't feel able to pick him up.
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
>>
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
>>
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 wanted to treat her baby with respect and was glad she decided to see him.
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
>>
Ending a pregnancy for fetal abnormality
>>
3-4 years since pregnancy ended
>>
Interview 07
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Describes how she found it very difficult to leave the hospital.
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
>>
Ending a pregnancy for fetal abnormality
>>
5-7 years since pregnancy ended
>>
Interview 22
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Says that she felt relieved that the termination was over and that she and her husband could get on with their lives.
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
>>
Ending a pregnancy for fetal abnormality
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3-4 years since pregnancy ended
>>
Interview 24
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She found dealing with her young daughter's questions when she got home was very difficult as were the next few weeks over Christmas.
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
>>
Ending a pregnancy for fetal abnormality
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1-2 years since pregnancy ended
>>
Interview 12
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She felt unprepared for the amount of bleeding she experienced after leaving hospital and says it was hard to avoid the maternity section of the super
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
>>
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 that it was difficult to leave the baby behind and then deal with the physical after effects of having had a 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.
Topic
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Ending a pregnancy for fetal abnormality
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Leaving hospital and going home
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Leaving hospital and going home
Leaving hospital and going home
Pregnancy & children
>>
Ending a pregnancy for fetal abnormality
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Leaving hospital and going home
>>
Leaving hospital and going home
Leaving hospital and going home
Pregnancy & children
>>
Ending a pregnancy for fetal abnormality
>>
1-2 years since pregnancy ended
>>
Interview 06
>>
They found it helpful that staff at the specialist hospital understood them and the difficulties they were facing.
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.
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