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Heart disease
Parents of children with congenital heart disease
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Discovery :
Parent's reactions
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Talking to health professionals
After birth:
Signs, symptoms & diagnosis after birth
During pregnancy:
Scans, tests & decisions during pregnancy
Preparing for birth & labour
Adapting to life :
How it affects daily life
Follow-up
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Talking to your child about their heart
Financial concerns
Messages to other parents
Impact on family
How it affects parents
How it affects relationships
How it affects siblings
How it affects grandparents
Feeding & medication :
Feeding
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The death of a child :
Dying in hospital
Funeral, post mortem & inquest
Bereavement, sources support & reactions of others
Surgery & cardiac catheterisation :
Emergency surgery
Waiting for an operation
The operation
Accommodation for parents
Paediatric intensive care
Moving to the ward
Taking your child home
Pacemakers
Child's quality of life & development :
A child's quality of life
A child's development
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Parents of children with congenital heart disease
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Heart disease
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Parents of children with congenital heart disease
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Child aged 1-3
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Interview CH12
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Explains why they decided to have an amniocentesis and the positive benefits of it.
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.
Heart disease
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Parents of children with congenital heart disease
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Child aged 1-3
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Interview CH14
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A mother of twins describes how she decided to continue with her pregnancy when she was told one of them had a serious heart defect.
Sam was diagnosed with a complete Atrioventricular Septal Defect (AVSD), pulmonary atresia and right atrial isomerism. Other problems: No spleen and mal-rotation of the gut. Treatment: A BT shunt at 24 hrs old, followed by the Glenn procedure at 6 months. More surgery planned. Current medication: warfarin, penicillin.
Heart disease
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Parents of children with congenital heart disease
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Child aged under 1
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Interview CH28
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Explains how they made a decision to take their baby off the ventilator.
Noah (2000-2001) was diagnosed with critical aortic stenosis at 12 hours old. He died aged 4 and a half months old following three operations to try to repair his heart. Noah spent 4 and a half months in intensive care.
Heart disease
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Parents of children with congenital heart disease
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Child aged under 1
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Interview CH28
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Explains that they don't regret the decision they made to keep trying with different operations in the hope that her baby would get better.
Noah (2000-2001) was diagnosed with critical aortic stenosis at 12 hours old. He died aged 4 and a half months old following three operations to try to repair his heart. Noah spent 4 and a half months in intensive care.
Heart disease
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Parents of children with congenital heart disease
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Child aged under 1
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Interview CH31
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Advises parents to be well informed and to take an active part in their child's care.
Vikram was diagnosed with a large ventricular septal defect (VSD) at 3 months old. He had corrective open heart surgery to close the VSD at four and a half months old. He is recovering well and no further treatment is expected. Current medication: none.
Heart disease
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Parents of children with congenital heart disease
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Child aged under 1
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Interview CH01
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Explain that they chose to proceed with the pregnancy and opt for surgery because they would not have considered a termination.
Their son was diagnosed with Hypoplastic Left Heart Syndrome. Treatment: Japanese Stage 1 Norwood at 4 days old and Stage 2 Norwood at 4 months old. Stage 3 is planned for pre-school. Heart Scan at local hospital every 3 months. Current medication: aspirin, captopril. Monthly injection to prevent bronchial infections.
Heart disease
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Parents of children with congenital heart disease
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Child aged over 5
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Interview CH02
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Explain that quality of life was an important factor in their decision to proceed with her pregnancy.
Thomas was diagnosed with Tricuspid Atresia, Transposition of the Great Arteries and Coarctation of the Aorta. Treatment: An arterial switch operation at 36 hrs old followed by a BT shunt at 5 months, a Kawashima at 33 months and a Fontan at age 7. Current medication: wafarin.
Heart disease
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Parents of children with congenital heart disease
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Child aged 1-3
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Interview CH06
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It was difficult during pregnancy for the doctors to give them a complete diagnosis of their baby's heart defects & it was hard to make a decision abo
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.
Heart disease
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Parents of children with congenital heart disease
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Child aged 4-5
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Interview CH09
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Explain that his condition was so serious that there was no time to consider any option other than to have an operation.
Their son was diagnosed with Coarctation of the Aorta, PDA, Bicuspid Aortic Valve, Hypoplastic Aortic Arch, VSD, Mitral Stenosis and Pulmonary Hypertension. Treatment: Surgery at 3 weeks old, mitral valve replacement at 2.5 years. 2 cardiac catheterisations at 2½ yrs and at 3½ yrs. Further mitral valve replacement planned. Current medication: warfarin.
Topic
Heart disease
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Parents of children with congenital heart disease
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Scans, tests & decisions during pregnancy
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Scans, tests & decisions during pregnancy
Scans, tests & decisions during pregnancy
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