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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:
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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
Medication
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 CH05
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Daily life involves many hospital appointments but doesn't hinder the quality of their family's life.
Joe was diagnosed with Di-George Syndrome and Tetralogy of Fallots. Treatment: one operation at 3 weeks old, 10 months and at 18 months old. 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 CH04
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He has to use holiday time to go to hospital appointments and she has to take unpaid leave. Her career plans have had to change.
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 CH23
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They took their six-year-old daughter to some appointments and check-ups so that she could see what was happening to her younger sister.
Caitlan was diagnosed with Pulmonary Atresia, VSD and Dextro cardia. Treatment: closed heart surgery at 48 hrs old and open heart surgery at 11 months old. Further surgery planned when their daughter is older. Current medication: none.
Heart disease
>>
Parents of children with congenital heart disease
>>
Child aged 1-3
>>
Interview CH14
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Describes anxieties about sibling rivalry and how the hospital made sure children had fun when they had to accompany their sibling to clinics.
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.
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