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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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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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Normal results or declining screening
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Interview AN21
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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
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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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Written information can seem overwhelming, but people can understand the difference between screening and diagnosis if it is explained clearly.
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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Continuing with an affected pregnancy
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Interview AN07
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Their nuchal scan results gave them a risk of 1 in 21. They felt they needed certainty, so they had CVS (Chorionic Villus Sampling).
Third pregnancy, after two miscarriages. Nuchal translucency 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 AN34
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Having missed the deadline for a combined nuchal scan and blood test she was offered CVS (Chorionic Villus Sampling) but refused.
Routine screening experiences. Healthy baby born 2002.
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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They needed definite confirmation that the baby had Patau's syndrome, and agreed with medical advice to have amniocentesis.
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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Ending an affected pregnancy
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Interview AN35
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They worried about the risk of miscarriage but decided to have CVS (Chorionic Villus Sampling) in their first pregnancy because their screening result
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 AN31
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She needed to know whether her baby had Down's syndrome, but felt a bit pressurised into having CVS (Chorionic Villus Sampling) immediately.
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 AN17
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Sometimes healthcare staff assume you will have further tests. When the nuchal scan results in her second pregnancy indicated an increased chance of a
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 AN39
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Watching a TV programme in her most recent pregnancy made her decide to have amniocentesis to check for Down's syndrome.
Hypoplastic left heart suspected at 19-week scan, confirmed by cardiac scan. Couple decided to end the pregnancy. Chose amniocentesis in next pregnancy (baby born 2002).
Pregnancy & children
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Antenatal Screening
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Ending an affected pregnancy
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Interview AN40
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Watching a TV programme in her first pregnancy made her realise that screening could not give a definite diagnosis, so she decided to have amniocentes
Down's syndrome detected by amniocentesis in first pregnancy. Couple decided to end the pregnancy. Baby son born since.
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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CVS (Chorionic Villus Sampling) was much more painful than they expected, but it was worth it to have a definite diagnosis.
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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Continuing with an affected pregnancy
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Interview AN07
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She quickly realised in the heart scan that something was wrong with the baby's heart, and the silence was unnerving.
Third pregnancy, after two miscarriages. Nuchal translucency 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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Continuing with an affected pregnancy
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Interview AN38
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It was better that the doctor explained the baby's many problems at the end of the scan rather than during it.
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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Ending an affected pregnancy
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Interview AN31
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They were both very upset, and couldn't talk about what they would do until they had the CVS (Chorionic Villus Sampling) results.
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 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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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 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 AN42
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Discovering her baby had a heart condition made the pregnancy traumatic. She would rather not have known during pregnancy.
Their daughter was diagnosed with Hypoplastic Right Heart Syndrome, Tricuspid Valve, Coarctation of the Aorta, Transposition of the Great Arteries. Treatment: A banding operation at 22 hrs old, repeated at 1 week old. A cardiac catheter at 10 months and a CP shunt at 1 yr. Further palliative operations planned. Current Medication: Phenoxybenzamine Hydrochloride. More of this interview can be seen on the DIPEX Congenital Heart Disease site as interview CHD06.
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 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 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 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 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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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.
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 AN40
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It was hard taking the mifepristone tablets to prepare for the termination. She kept wondering if the diagnosis was wrong.
Down's syndrome detected by amniocentesis in first pregnancy. Couple decided to end the pregnancy. Baby son born 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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Seeing the baby reassured her that the diagnosis of Edwards' syndrome was correct. Her husband chose not to look.
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 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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Ending an affected pregnancy
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Interview AN40
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In her next pregnancy she wanted to know for certain if anything was wrong, so she had amniocentesis again.
Down's syndrome detected by amniocentesis in first pregnancy. Couple decided to end the pregnancy. Baby son born since.
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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Their daughter's Down's syndrome was not formally diagnosed for two weeks after birth, but the mother had already wondered about it.
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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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
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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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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
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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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The mother thought something was wrong with her baby after birth, but everyone reassured her till the baby developed pneumonia when she was several we
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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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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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
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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 were glad they did not know the diagnosis before birth, as it would have made them worry throughout pregnancy and perhaps created pressure to hav
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 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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Ending an affected pregnancy
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Interview AN39
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You can never predict how you would react if you found out something was wrong with your baby.
Hypoplastic left heart suspected at 19-week scan, confirmed by cardiac scan. Couple decided to end the pregnancy. Chose amniocentesis in next pregnancy (baby born 2002).
Topic
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Antenatal Screening
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Thoughts, discussions and info after diagnosis
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Thoughts, discussions and info after diagnosis
Thoughts, discussions and info after diagnosis
Pregnancy & children
>>
Antenatal Screening
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Thoughts, discussions and info after diagnosis
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Thoughts, discussions and info after diagnosis
Thoughts, discussions and info after diagnosis
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