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Pregnancy & children
Antenatal Screening
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Making decisions about screening :
Thinking about screening and what it is for
Special reasons for wanting screening
Reasons for not having some or all screening
Discussing screening choices with your partner
Attitudes to disability and termination
Information for making decisions
Experiences of screening :
Nuchal scan (low risk results)
Nuchal scan (being told something may be wrong)
Early dating scans
18-20 week scan (low risk results)
18-20 week scan (being told something may be wrong)
Blood test screening
Understanding screening test results
Having further tests and getting results :
Deciding whether to have further diagnostic tests
Having further tests and waiting for results
Getting diagnostic test results
Thoughts, discussions and info after diagnosis
Deciding to continue with the pregnancy :
Making the decision to continue with the pregnancy
What the rest of pregnancy and birth was like
Feelings about screening looking back
Deciding to end the pregnancy :
Making the decision to end the pregnancy
The experience of ending a pregnancy
Feelings and reflections afterwards
Views on screening & feelings in later pregnancies
When screening does not detect a condition :
Learning after birth that the baby has a condition
How it has affected parents' views about screening
Living with disabilities or a chronic condition :
Living with a child with a long term condition
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Antenatal Screening
Subject index
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Pregnancy & children
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Antenatal Screening
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Ending an affected pregnancy
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Interview AN35
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They thought the CVS (Chorionic Villus Sampling) results were negative, but then got another phone call to say the baby had Turner's syndrome.
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
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Antenatal Screening
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Ending an affected pregnancy
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Interview AN36
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She still feels screening is valuable, but thinks that the way it is presented to women is too reassuring
Nuchal scan in first pregnancy gave low risk result, but anomaly scan at 21 weeks detected abnormalities, confirmed as Edwards' syndrome by amniocentesis. Couple decided to end the pregnancy.
Pregnancy & children
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Antenatal Screening
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Ending an affected pregnancy
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Interview AN17
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She considered not having any screening in her next pregnancy. Screening is valuable but sometimes raises more questions than it answers.
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
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Antenatal Screening
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Normal results or declining screening
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Interview AN09
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She did not want to know if her baby had Down's syndrome but wanted to know about neural tube problems because of her family history.
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
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Antenatal Screening
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Normal results or declining screening
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Interview AN19
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Looking back she felt more explanation of the purpose of the 20-week anomaly scan would have been helpful.
Normal first pregnancy, routine screening experiences, including combined nuchal scan and blood test.
Pregnancy & children
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Antenatal Screening
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Ending an affected pregnancy
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Interview AN36
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The nuchal scan reassured them, but with hindsight they felt they did not really understand the nature of screening and risk information.
Nuchal scan in first pregnancy gave low risk result, but anomaly scan at 21 weeks detected abnormalities, confirmed as Edwards' syndrome by amniocentesis. Couple decided to end the pregnancy.
Pregnancy & children
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Antenatal Screening
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Normal results or declining screening
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Interview AN25
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Her blood test results were reassuringly low risk, but she knew this could not guarantee Down's syndrome was not present.
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
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Antenatal Screening
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Normal results or declining screening
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Interview AN28
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She felt well advised by healthcare staff about the purpose and consequences of screening.
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
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Antenatal Screening
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Baby's condition detected after birth
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Interview AN03
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They would like to have their scan pictures reviewed by a specialist to know whether their daughter's heart condition could have been detected before
Daughter born November 2000 with congenital heart problems not detected by antenatal screening, diagnosed when the baby was 10 weeks old. Corrective surgery at 11 months and 2 years.
Pregnancy & children
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Antenatal Screening
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Normal results or declining screening
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Interview AN33
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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
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Antenatal Screening
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Normal results or declining screening
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Interview AN33
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Screening cannot give you definite information and having further tests would mean more anxiety.
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
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Antenatal Screening
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Ending an affected pregnancy
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Interview AN18
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She relied only on scans in her next pregnancy, and felt the triple test might make her anxious unnecessarily.
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
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Antenatal Screening
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Normal results or declining screening
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Interview AN14
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The midwife explaining her scan results got the graph the wrong way round, but checked it with a colleague.
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
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Antenatal Screening
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Normal results or declining screening
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Interview AN14
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She had good information about the scan results but sometimes having more information raises more questions for staff to explain.
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
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Antenatal Screening
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Normal results or declining screening
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Interview AN01
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Her nuchal scan results were lower risk, but she still did not feel completely reassured.
Normal first pregnancy, routine screening experiences. Had to spend time in hospital late in pregnancy for investigation of bleeding.
Pregnancy & children
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Antenatal Screening
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Continuing with an affected pregnancy
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Interview AN15
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She felt screening was not effective in her case. She would have screening again another time but would want more scans.
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
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Antenatal Screening
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Baby's condition detected after birth
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Interview AN12
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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
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Antenatal Screening
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Baby's condition detected after birth
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Interview AN12
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Because her nuchal scan results reassured her she was low risk, she never expected her baby would have Down's syndrome.
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
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Antenatal Screening
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Baby's condition detected after birth
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Interview AN10
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Her baby's hydrocephalus was not detected in pregnancy, but at a scan at 38 weeks she thought the baby looked strange.
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
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Antenatal Screening
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Baby's condition detected after birth
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Interview AN10
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She felt both guilty that she must have done something wrong to cause the hydrocephalus and angry that it was not detected sooner.
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
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Antenatal Screening
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Baby's condition detected after birth
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Interview AN10
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As not all problems can be detected at the 20-week scan, she felt more screening should be offered in later pregnancy.
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
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Antenatal Screening
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Baby's condition detected after birth
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Interview AN03
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One doctor at the specialist hospital told them their daughter's heart condition should have been detected at the 20-week scan.
Daughter born November 2000 with congenital heart problems not detected by antenatal screening, diagnosed when the baby was 10 weeks old. Corrective surgery at 11 months and 2 years.
Pregnancy & children
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Antenatal Screening
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Continuing with an affected pregnancy
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Interview AN29
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Her son's heart condition turned out to be more serious than expected but she still felt screening was valuable.
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.
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