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Discovery :
Parent's reactions
Telling others
Your ideas about causes
Finding information
Sources of support
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
Coping
Talking to your child about their heart
Financial concerns
Messages to other parents
Impact on family

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

Subject index

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 >> Parents of children with congenital heart disease >> Child aged under 1 >> Interview CH01 >> 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 >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH06 >> 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.

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