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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 translucency scan (low risk results)
Nuchal scan (being told something may be wrong)
Early dating scans
Blood test screening
18-20 week scan (low risk results)
18-20 week scan (being told something may be wrong)
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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Continuing with an affected pregnancy
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Interview AN29
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She had a routine fetal heart scan because she was diabetic, and was shocked to discover the baby had a heart condition.
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
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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 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
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Antenatal Screening
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Continuing with an affected pregnancy
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Interview AN43
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They had made it clear they wanted to continue the pregnancy, and were offended that termination was offered as an option.
Their son was diagnosed with Hypoplastic Left Ventricle, VSD, Mitral Atresia, Pulmonary Atresia, Right Atrial Isomerism, aorta arising from the right ventricle, TAPVD and Bilateral Superior Vena Cava and no spleen. Treatment: modified BT shunt (6 days old) open heart surgery (3 months and 6 months), 1st stage Fontan (10 months). Further surgery planned. Current medication: Warfarin, Enanapril, Frusemide, Penicillin. More of this interview can be seen on the DIPEX Congenital Heart Disease site as interview CHD07.
Pregnancy & children
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Antenatal Screening
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Continuing with an affected pregnancy
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Interview AN41
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They were given useful information about the condition and about termination, but it was difficult to have to read about termination.
Their son was diagnosed with Tricuspid Atresia, a large VSD, ASD, small right ventricle & small pulmonary artery. Treatment: Modified BT Shunt & Atrial Septostomy at 24 hrs old. Cardiac catheters & further operations planned when their child is older. Current Medication: diuretics, aspirin, sytron, anti-reflux and lactulose. More of this interview can be seen on the DIPEX Congenital Heart Disease site as interview CHD03.
Pregnancy & children
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Antenatal Screening
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Continuing with an affected pregnancy
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Interview AN04
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Before deciding to continue with the pregnancy, she made herself think through all her options, none of which seemed bearable.
Hypoplastic left heart diagnosed after scan and amniocentesis at 25 weeks in second pregnancy. Decided to continue with the pregnancy. Son is now 2.
Pregnancy & children
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Antenatal Screening
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Ending an affected pregnancy
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Interview AN02
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It was hard to start discussing whether to end the pregnancy. Their doctor did not appreciate how difficult it was.
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
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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 wished in retrospect they had taken longer to make the decision to end the pregnancy.
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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Ending an affected pregnancy
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Interview AN32
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Once they knew the baby had Edwards' syndrome, they felt termination was inevitable, but needed more sympathetic support and counselling.
Problems detected in first pregnancy at routine 12 week dating scan - confirmed as Edward's syndrome by CVS. 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 AN31
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She will never feel comfortable with the decision to end the pregnancy, but counselling has helped turn guilt into regret.
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
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Antenatal Screening
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Ending an affected pregnancy
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Interview AN36
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Counselling after the termination helped her and her husband understand their different ways of grieving.
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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Baby's condition detected after birth
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Interview AN10
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It helped her to know she was not the only parent to have negative feelings. It was difficult to share these feelings with close family.
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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Normal results or declining screening
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Interview AN28
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She was impressed with the genetic counselling and testing she was offered, and found it reassuring.
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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Normal results or declining screening
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Interview AN09
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She was referred to a prenatal diagnosis clinic because of anxiety about a family history of stillbirth and hydrocephalus. A scan at 13 weeks was reas
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 AN28
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She was anxious about her mother's feelings about genetic testing because of a family history of learning disabilities.
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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Ending an affected pregnancy
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Interview AN31
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In her next pregnancy, she thought she would want CVS (Chorionic Villus Sampling), but decided against it because her nuchal scan results were low ris
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.
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