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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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After birth:
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During pregnancy:
Scans, tests & decisions during pregnancy
Preparing for birth & labour
Adapting to life :
How it affects daily life
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Talking to your child about their heart
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Impact on family
How it affects parents
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How it affects siblings
How it affects grandparents
Feeding & medication :
Feeding
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The death of a child :
Dying in hospital
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Bereavement, sources support & reactions of others
Surgery & cardiac catheterisation :
Emergency surgery
Waiting for an operation
The operation
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Child's quality of life & 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 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 CH01
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She felt like she was going through a bereavement and was cut off from the contact with midwives she could have expected in a normal pregnancy once sh
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.
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