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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:
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Adapting to life :
How it affects daily life
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Talking to your child about their heart
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How it affects parents
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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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Taking your child home
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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 4-5
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Interview CH18
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It took a bit of time to build up her son's confidence to be at nursery without his mum but now he is happy to be left there and he enjoys it.
Their son was diagnosed with mirror image, transposition of the great arteries, left sided valve atresia and pulmonary stenosis. Treatment: A BT Shunt at six months old, followed by the Stage 1 Glenn procedure at 4.5 yrs. Cardiac catheter operations every 2 yrs. Further surgery is planned. Current medication: aspirin.
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 CH19
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Describes the way the doctors talked to her son and explained that they always had time for him.
Luke (1996-2002) was diagnosed with coarctation of the aorta, transposition of the great arteries, VSD, pulmonary stenosis and double inlet left ventricle. He died when he was nearly 6 yrs old after his fourth operation (not including cardiac catheters). He had epilepsy and asthma and was quite ill at times. Medication: warfarin, medicines for asthma and epilepsy, diuretics after operations. Family live 15 miles from the specialist hospital.
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 CH08
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She was excessively protective of her baby when they were first home after surgery but she became more relaxed after a time.
Daniel was diagnosed with Tricuspid Atresia, Hypoplastic Right Ventricle, VSD and Transposition of the Great Arteries. Treatment: cardiac catheter at 24 hrs old, banding operation at 2 weeks old, followed by 1st stage Fontan at 10 months old. Further catheters and surgery planned. Current medication: warfarin.
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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Explains that her son was proudly showing off his scar to everybody when he was around at a friends house for tea.
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.
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 CH22
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Felt confident and relieved to be bringing their daughter home.
Millie was diagnosed with Coarctation of the Aorta and a VSD at 3 weeks old. Treatment: she had closed heart surgery to repair the coarctation and a band was put around the pulmonary artery at 3 weeks old. At 7 months old she had open heart surgery to repair her VSD. Current medication: captopril.
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