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• >> Antenatal Screening >> Attitudes to disability and termination >> Attitudes to disability and termination

Attitudes to disability and termination

• Pregnancy & children >> Antenatal Screening >> Attitudes to disability and termination >> Attitudes to disability and termination

Attitudes to disability and termination

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• Pregnancy & children >> Antenatal Screening >> Normal results or declining screening >> Interview AN37 >> She would encourage parents to think carefully why they are having screening and what they would do if an abnormality is found.

Couple declined screening on principle in previous two and current pregnancy. Had a scan at around 20 weeks in two pregnancies for dating purposes only.

• Pregnancy & children >> Antenatal Screening >> Normal results or declining screening >> Interview AN28 >> Her brother's unexplained severe learning disabilities made her worried about screening and pregnancy.

Healthy pregnancy after an early miscarriage. Interviewee has a brother with severe learning disabilities and describes having genetic screening and counselling in early pregnancy.

• Pregnancy & children >> Antenatal Screening >> Normal results or declining screening >> Interview AN22 >> She feels society is too concerned with perfection. There needs to be more debate about support for people with disabilities.

Declined all screening except 20-week anomaly scan in two most recent pregnancies.

• Pregnancy & children >> Antenatal Screening >> Normal results or declining screening >> Interview AN24 >> She was anxious about her family history of Down's syndrome, although genetic tests showed no evidence it was inherited.

Family history of Down's syndrome. Had amniocentesis in both pregnancies to rule out Down's syndrome, even though nuchal scan results were low risk.

• Pregnancy & children >> Antenatal Screening >> Normal results or declining screening >> Interview AN24 >> She decided not to tell her mother she was pregnant at first because it would make her anxious too.

Family history of Down's syndrome. Had amniocentesis in both pregnancies to rule out Down's syndrome, even though nuchal scan results were low risk.

• Pregnancy & children >> Antenatal Screening >> Normal results or declining screening >> Interview AN22 >> She decided to have no screening except the anomaly scan because she could not contemplate a termination, especially after a miscarriage.

Declined all screening except 20-week anomaly scan in two most recent pregnancies.

• Pregnancy & children >> Antenatal Screening >> Normal results or declining screening >> Interview AN37 >> She decided not to have any screening because it creates anxiety and as a Christian she would never have a termination.

Couple declined screening on principle in previous two and current pregnancy. Had a scan at around 20 weeks in two pregnancies for dating purposes only.

• Pregnancy & children >> Antenatal Screening >> Normal results or declining screening >> Interview AN37 >> He did not want screening because as a Christian he feels it undermines people with disabilities and he would never consider termination.

Couple declined screening on principle in previous two and current pregnancy. Had a scan at around 20 weeks in two pregnancies for dating purposes only.

• Pregnancy & children >> Antenatal Screening >> Normal results or declining screening >> Interview AN19 >> A friend who had a child with Down's syndrome worried about what would happen to the child when she died.

Normal first pregnancy, routine screening experiences, including combined nuchal scan and blood test.

• Pregnancy & children >> Antenatal Screening >> Normal results or declining screening >> Interview AN33 >> She did not want screening because she would not have further tests, and would rather not worry for the rest of the pregnancy.

Couple declined all early screening in two pregnancies, because they would not consider terminating an affected pregnancy, but did have 20-week anomaly scans. Currently pregnant.

• Pregnancy & children >> Antenatal Screening >> Normal results or declining screening >> Interview AN37 >> He feels people should be more fully informed about the purpose of screening and that it could lead to termination.

Couple declined screening on principle in previous two and current pregnancy. Had a scan at around 20 weeks in two pregnancies for dating purposes only.

• Pregnancy & children >> Antenatal Screening >> Normal results or declining screening >> Interview AN34 >> She and her partner agreed quickly about screening but their views might change now they already have a baby.

Routine screening experiences. Healthy baby born 2002.

• Pregnancy & children >> Antenatal Screening >> Normal results or declining screening >> Interview AN09 >> She and her husband had different views about how they would cope with a child with physical or learning disabilities.

Routine screening in two pregnancies - declined screening for Down's syndrome. Family history of hydrocephalus led to early prenatal counselling but no risk identified.

• Pregnancy & children >> Antenatal Screening >> Normal results or declining screening >> Interview AN01 >> When she and her husband discussed their feelings about disability after screening, they discovered they had different views.

Normal first pregnancy, routine screening experiences. Had to spend time in hospital late in pregnancy for investigation of bleeding.

• Pregnancy & children >> Antenatal Screening >> Normal results or declining screening >> Interview AN23 >> She and her partner agreed quickly what they'd do with screening results, but it was difficult to start the discussion.

After initial contact with NHS, decided to have antenatal care in France, including 3 scans with normal results. Baby born 2 months early in England.

• Pregnancy & children >> Antenatal Screening >> Normal results or declining screening >> Interview AN21 >> She did not want to influence her husband's views about screening, but they found they agreed.

Normal first pregnancy; some early scanning after bleeding in first trimester. Screening includes nuchal translucency scan and blood testing.

• Pregnancy & children >> Antenatal Screening >> Normal results or declining screening >> Interview AN13 >> They discussed at length what they would do with screening results, but he felt he should support his partner's decision.

Healthy pregnancy after 2 miscarriages; following nuchal scan results they considered amniocentesis and decided against. Baby born healthy, although mother had obstetric cholestasis in late pregnancy.

• Pregnancy & children >> Antenatal Screening >> Normal results or declining screening >> Interview AN08 >> She might have considered amniocentesis if her scan results had shown she had an increased chance of something being wrong with the baby and she was f

Normal first pregnancy, routine screening experiences. Private care throughout pregnancy.

• Pregnancy & children >> Antenatal Screening >> Normal results or declining screening >> Interview AN14 >> They postponed discussion of what they might do about their screening results until they had further information to discuss.

Seven and a half months pregnant with twins conceived by IVF. Has had scans throughout pregnancy; nuchal translucency scan had to be repeated because of the babies' position.

• Pregnancy & children >> Antenatal Screening >> Normal results or declining screening >> Interview AN19 >> She and her husband agreed they would have chosen to end the pregnancy if the baby had Down's syndrome.

Normal first pregnancy, routine screening experiences, including combined nuchal scan and blood test.

• Pregnancy & children >> Antenatal Screening >> Normal results or declining screening >> Interview AN25 >> They did not discuss in advance what they would do with the results of screening, and were waiting until they had further information.

Two normal pregnancies. Nuchal scan not available locally, so had blood screening. Unable to have 20-week scan in first pregnancy because of staff shortages.

• Pregnancy & children >> Antenatal Screening >> Normal results or declining screening >> Interview AN05 >> She did not want to worry about something being wrong unless it actually happened.

4 months pregnant. Normal screening results. One scan in early pregnancy, no other scans planned. Alphafetoprotein results not yet received.

• Pregnancy & children >> Antenatal Screening >> Normal results or declining screening >> Interview AN11 >> She and her partner had different views about what they would do with the results of screening tests, so they postponed further discussion.

Normal first pregnancy; screening carried out in US, before return to UK when 6 months pregnant. Declined amniocentesis (offered as standard). Compares US and UK.

• Pregnancy & children >> Antenatal Screening >> Normal results or declining screening >> Interview AN23 >> Having seen her cousin's experience of Down's syndrome, she would not want to see her own child go through the same thing.

After initial contact with NHS, decided to have antenatal care in France, including 3 scans with normal results. Baby born 2 months early in England.

• Pregnancy & children >> Antenatal Screening >> Normal results or declining screening >> Interview AN21 >> From previous experience, she felt having a baby with Down's syndrome would put pressure on her relationship with her husband.

Normal first pregnancy; some early scanning after bleeding in first trimester. Screening includes nuchal translucency scan and blood testing.

• Pregnancy & children >> Antenatal Screening >> Normal results or declining screening >> Interview AN25 >> She would want to be prepared for having a baby with Down's syndrome, having seen a friend's experiences.

Two normal pregnancies. Nuchal scan not available locally, so had blood screening. Unable to have 20-week scan in first pregnancy because of staff shortages.

• Pregnancy & children >> Antenatal Screening >> Normal results or declining screening >> Interview AN11 >> Having a great-aunt who had Down's syndrome, she would want to know in advance if her baby had the condition, but would continue the pregnancy.

Normal first pregnancy; screening carried out in US, before return to UK when 6 months pregnant. Declined amniocentesis (offered as standard). Compares US and UK.

• Pregnancy & children >> Antenatal Screening >> Normal results or declining screening >> Interview AN21 >> Having talked to her GP, she felt there was little point in having screening if you would not consider termination.

Normal first pregnancy; some early scanning after bleeding in first trimester. Screening includes nuchal translucency scan and blood testing.

• Pregnancy & children >> Antenatal Screening >> Continuing with an affected pregnancy >> Interview AN30 >> When they went for the nuchal scan, the sonographer asked why they would want to know about abnormalities if they would not consider a termination.

Down's syndrome suspected at nuchal scan. Couple declined amniocentesis and continued with the pregnancy. Further scans suggested heart problems (operated on successfully since baby's birth).

• Pregnancy & children >> Antenatal Screening >> Normal results or declining screening >> Interview AN11 >> Her doctor in America advised her it was useful preparation to find out before birth if the baby had any problems.

Normal first pregnancy; screening carried out in US, before return to UK when 6 months pregnant. Declined amniocentesis (offered as standard). Compares US and UK.

• Pregnancy & children >> Antenatal Screening >> Normal results or declining screening >> Interview AN14 >> It is helpful preparation to find out in advance if the baby has problems.

Seven and a half months pregnant with twins conceived by IVF. Has had scans throughout pregnancy; nuchal translucency scan had to be repeated because of the babies' position.

• Pregnancy & children >> Antenatal Screening >> Normal results or declining screening >> Interview AN27 >> She talked about the impact of sickle cell disease on her friend's family and how it would affect her own thinking.

Healthy pregnancy, routine screening. Some blood test results came back abnormal. Levels of information and choice have been a concern.

• Pregnancy & children >> Antenatal Screening >> Normal results or declining screening >> Interview AN09 >> It is time-consuming for health professionals to inform people fully, especially about all the conditions being screened for.

Routine screening in two pregnancies - declined screening for Down's syndrome. Family history of hydrocephalus led to early prenatal counselling but no risk identified.

• Pregnancy & children >> Antenatal Screening >> Normal results or declining screening >> Interview AN28 >> She felt by the time of the 20-week scan it would be too late to consider ending the pregnancy.

Healthy pregnancy after an early miscarriage. Interviewee has a brother with severe learning disabilities and describes having genetic screening and counselling in early pregnancy.

• Pregnancy & children >> Antenatal Screening >> Continuing with an affected pregnancy >> Interview AN15 >> At a scan at 8 months she learned that her baby's brain was partially formed and the prognosis was poor, but the baby has since made better progress t

Following two miscarriages, during next pregnancy had frequent scans. A scan at 8 months unexpectedly found hydrocephalus and brain problems. Termination offered but rejected.

• Pregnancy & children >> Antenatal Screening >> Ending an affected pregnancy >> Interview AN31 >> She decided not to meet another woman with a baby with Down's syndrome, because she would feel under pressure to continue the pregnancy.

Problems detected in first pregnancy at nuchal scan - confirmed as Down's syndrome by CVS. Couple decided to end the pregnancy. Subsequent normal pregnancy and birth.

• Pregnancy & children >> Antenatal Screening >> Continuing with an affected pregnancy >> Interview AN30 >> During pregnancy they went to meet other families and people with disabilities to help their decision-making.

Down's syndrome suspected at nuchal scan. Couple declined amniocentesis and continued with the pregnancy. Further scans suggested heart problems (operated on successfully since baby's birth).

• Pregnancy & children >> Antenatal Screening >> Ending an affected pregnancy >> Interview AN02 >> From her experience of meeting children with Down's syndrome she did not realise the range of disability and health problems it could involve, from mi

1997 - nuchal scan and CVS confirmed Down's syndrome - decided to end the pregnancy. Has since had a healthy baby and is now pregnant again. Had CVS again.

• Pregnancy & children >> Antenatal Screening >> Continuing with an affected pregnancy >> Interview AN15 >> She wanted to keep the baby, although she was advised to have a termination. She felt at 8 months it was simply too late.

Following two miscarriages, during next pregnancy had frequent scans. A scan at 8 months unexpectedly found hydrocephalus and brain problems. Termination offered but rejected.

• Pregnancy & children >> Antenatal Screening >> Continuing with an affected pregnancy >> Interview AN30 >> They wanted to be treated as normal expectant parents, and she joined local NHS antenatal classes.

Down's syndrome suspected at nuchal scan. Couple declined amniocentesis and continued with the pregnancy. Further scans suggested heart problems (operated on successfully since baby's birth).

• Pregnancy & children >> Antenatal Screening >> Continuing with an affected pregnancy >> Interview AN29 >> In her next pregnancy she had screening again. She would not want to see another baby suffer like her son.

After four miscarriages, scan in fifth pregnancy found heart defects. Couple decided to continue the pregnancy. Son, now 4, has had some additional problems. Pregnant at time of interview.

• Pregnancy & children >> Antenatal Screening >> Ending an affected pregnancy >> Interview AN31 >> She had always thought she would end a pregnancy if something was wrong, but the decision was heartbreaking.

Problems detected in first pregnancy at nuchal scan - confirmed as Down's syndrome by CVS. Couple decided to end the pregnancy. Subsequent normal pregnancy and birth.

• Pregnancy & children >> Antenatal Screening >> Ending an affected pregnancy >> Interview AN18 >> When they were told in their first pregnancy that the baby had severe spina bifida, they felt ending the pregnancy was the best option, because they d

Spina bifida detected at 20-week scan in first pregnancy - some family history of the condition. Couple decided to end the pregnancy. Now pregnant again.

• Pregnancy & children >> Antenatal Screening >> Ending an affected pregnancy >> Interview AN17 >> Sometimes she wishes she had not made the decision to end the pregnancy so quickly, and has mixed feelings about whether she did the right thing.

Hydrocephalus detected by 20-week scan and amniocentesis in first pregnancy. Felt the decision to end the pregnancy was rushed. Miscarriage and two healthy pregnancies since.

• Pregnancy & children >> Antenatal Screening >> Ending an affected pregnancy >> Interview AN35 >> The father felt more certain than the mother that they had done the right thing. Going back to work helped him recover.

Combined nuchal scan/blood test suggested high risk; early results ruled out trisomies but subsequently diagnosed a severe form of Turner's syndrome. Couple decided to end the pregnancy; now pregnant again.

• Pregnancy & children >> Antenatal Screening >> Ending an affected pregnancy >> Interview AN16 >> Deciding whether to continue or end a pregnancy can place great strain on relationships. It has to be a joint decision.

Anencephaly detected at 20-week scan in first pregnancy. Considered continuing the pregnancy but eventually decided to induce labour early. Second pregnancy miscarried. Now pregnant again.

• Pregnancy & children >> Antenatal Screening >> Ending an affected pregnancy >> Interview AN18 >> She would definitely want screening again, but will always feel anxious in subsequent pregnancies that something could go wrong.

Spina bifida detected at 20-week scan in first pregnancy - some family history of the condition. Couple decided to end the pregnancy. Now pregnant again.

• Pregnancy & children >> Antenatal Screening >> Baby's condition detected after birth >> Interview AN12 >> The delay in diagnosis and having a home delivery meant they got to know their daughter as a person first and had time to adjust gradually.

Second child born with Down's syndrome after low risk nuchal scan results, and no problems detected at 20-week scan. Home birth. Daughter now aged two.

• Pregnancy & children >> Antenatal Screening >> Baby's condition detected after birth >> Interview AN10 >> They were told the baby had severe brain damage. It was hard to come to terms with the shock.

Baby born in April 2002 with hydrocephalus which had not been picked up during screening. Baby has had surgery and is making good progress.

• Pregnancy & children >> Antenatal Screening >> Baby's condition detected after birth >> Interview AN12 >> She felt screening was pointless as it could not give a definite diagnosis. She was concerned about pressure to have perfect babies.

Second child born with Down's syndrome after low risk nuchal scan results, and no problems detected at 20-week scan. Home birth. Daughter now aged two.

• Pregnancy & children >> Antenatal Screening >> Baby's condition detected after birth >> Interview AN12 >> Having another baby with Down's syndrome would have major implications for the family, but it would be difficult to contemplate termination. Media ima

Second child born with Down's syndrome after low risk nuchal scan results, and no problems detected at 20-week scan. Home birth. Daughter now aged two.

• Pregnancy & children >> Antenatal Screening >> Baby's condition detected after birth >> Interview AN12 >> When people are told their baby will have Down's syndrome, they need more balanced information about life with the condition.

Second child born with Down's syndrome after low risk nuchal scan results, and no problems detected at 20-week scan. Home birth. Daughter now aged two.

• Pregnancy & children >> Antenatal Screening >> Baby's condition detected after birth >> Interview AN10 >> If she had known how bad her daughter's brain damage was expected to be, she might have considered termination, in fact she has made good progress. Sh

Baby born in April 2002 with hydrocephalus which had not been picked up during screening. Baby has had surgery and is making good progress.

• Pregnancy & children >> Antenatal Screening >> Baby's condition detected after birth >> Interview AN10 >> Although it was a shock to find her baby had hydrocephalus, she now feels her daughter has been a very positive influence on her life and given her ne

Baby born in April 2002 with hydrocephalus which had not been picked up during screening. Baby has had surgery and is making good progress.

• Pregnancy & children >> Antenatal Screening >> Continuing with an affected pregnancy >> Interview AN29 >> The results of a brain scan at 9 months suggested their son had severe brain damage, but they were determined not to give up hope. He was now at a mai

After four miscarriages, scan in fifth pregnancy found heart defects. Couple decided to continue the pregnancy. Son, now 4, has had some additional problems. Pregnant at time of interview.

• Pregnancy & children >> Antenatal Screening >> Baby's condition detected after birth >> Interview AN10 >> She felt determined to help her daughter make progress, and took pride in her achievements, even though she often felt guilty and tearful about pushin

Baby born in April 2002 with hydrocephalus which had not been picked up during screening. Baby has had surgery and is making good progress.

• Pregnancy & children >> Antenatal Screening >> Continuing with an affected pregnancy >> Interview AN15 >> Having her daughter has made her less selfish, but looking after her is very tiring. Uncertainty about her future has greatly strained relationships w

Following two miscarriages, during next pregnancy had frequent scans. A scan at 8 months unexpectedly found hydrocephalus and brain problems. Termination offered but rejected.

• Pregnancy & children >> Antenatal Screening >> Baby's condition detected after birth >> Interview AN12 >> Having a child with Down's syndrome has been an enriching experience and has changed their view of what is important in life.

Second child born with Down's syndrome after low risk nuchal scan results, and no problems detected at 20-week scan. Home birth. Daughter now aged two.