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Heart disease
Parents of children with congenital heart disease
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After birth:
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During pregnancy:
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Adapting to life :
How it affects daily life
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Feeding & medication :
Feeding
Medication
The death of a child :
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Bereavement, sources support & reactions of others
Surgery & cardiac catheterisation :
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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 CH07
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She overcame her baby's feeding problems by using a combination of breast-feeding, expressed milk by oral syringe and supplements.
Felix 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.
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 CH04
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They monitored their baby's feeds on a 24 hour chart, which had helped them to feel that they were making some progress with bottle feeding.
Their daughter was diagnosed with Truncus Arteriosus. Treatment: Surgery at 5 weeks old to fit a conduit and repair the hole. Cardiac catheterisation planned for pre-school. Current medication: captopril.
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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Describes the battle she had feeding her newborn baby but said it got better when he went on to solids.
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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Explains that feeding by NG tube was a tiring and time consuming process.
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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