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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 AN15
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If she had discovered her daughter's condition earlier in pregnancy, she would at least have had more time to prepare.
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 AN30
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Knowing before birth that their son would have special needs enabled them to make practical arrangements in advance.
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
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Antenatal Screening
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Continuing with an affected pregnancy
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Interview AN30
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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
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Antenatal Screening
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Normal results or declining screening
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Interview AN37
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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
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Antenatal Screening
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Normal results or declining screening
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Interview AN11
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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
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Antenatal Screening
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Normal results or declining screening
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Interview AN11
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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
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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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Finding out before birth that her son had a serious heart condition probably saved his life.
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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Continuing with an affected pregnancy
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Interview AN06
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They felt lucky their son's heart condition was detected early, and would make the same screening decisions again.
Third pregnancy, after two miscarriages. Nuchal scan suggested problems; CVS ruled out Down's syndrome but heart problems identified by further scan. Baby born March 2003, successful surgery completed.
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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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
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Antenatal Screening
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Continuing with an affected pregnancy
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Interview AN38
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Finding out their son had Patau's syndrome meant they could ensure he was treated with dignity when he was born.
Problems detected at 20-week scan. Amniocentesis confirmed Patau's syndrome. Couple decided to proceed with pregnancy. Baby born at 35 weeks and died after 3 minutes.
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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Although it was horrible at the time, having her son's heart condition diagnosed before birth probably saved his life.
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 AN43
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She was glad they discovered their son's heart condition late in pregnancy, so they had less time to worry.
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 AN44
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If her daughter's heart condition had not been found through antenatal screening, it might not have been detected until adulthood.
Their daughter was diagnosed with ostium primum Atrial Septal Defect (ASD). Treatment: Surgery at 18 months old to close the hole with a dacron patch. Stitches in the mitral valve. No further surgery planned. Current medication: none. More of this interview can be seen on the DIPEX Congenital Heart Disease site as interview CHD12.
Pregnancy & children
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Antenatal Screening
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Continuing with an affected pregnancy
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Interview AN46
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She was glad she did not know about her daughter's heart problem before birth, but in her second pregnancy she did want to know if there was a problem
Their daughter was diagnosed with pulmonary atresia, VSD & an overiding aorta. Treatment: closed heart surgery (shunt) at 11 days old, closed heart surgery (shunt) at 11 months old. Corrective open heart surgery at 2½ yrs old. Current medication: none. More of this interview can be seen on the DIPEX Congenital Heart Disease site as interview CHD30.
Pregnancy & children
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Antenatal Screening
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Normal results or declining screening
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Interview AN22
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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
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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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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
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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.
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