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Heart disease
Parents of children with congenital heart disease
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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
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 CH15
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They received financial help from the Family Trust Fund for expenses at the hospital and for a holiday.
Taylor was diagnosed with a complete Atrioventricular septal defect (AVSD). Treatment: surgery at 6 months old. No further treatment planned. 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 CH06
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They describe some of the help available and advise others to ask for help if they need it.
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.
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 CH21
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Describes the problems she had with feeding her baby and recalls that the health visitors didn't detect the real nature of her problem.
Their daughter was diagnosed with Total Anomalous Pulmonary Venous Circulation. She had open heart surgery at 5 months old. Current medication: none.
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 CH02
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She found it difficult to cope when she brought her baby home from hospital.
Thomas was diagnosed with Tricuspid Atresia, Transposition of the Great Arteries and Coarctation of the Aorta. Treatment: An arterial switch operation at 36 hrs old followed by a BT shunt at 5 months, a Kawashima at 33 months and a Fontan at age 7. Current medication: wafarin.
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 CH29
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She followed her gut instinct that her baby's symptoms were serious and this saved her baby's life.
Lee was diagnosed with Wolff-Parkinson-White Syndrome. Treatment: Flecainide up until 14 months old. Possibility of radio frequency ablation when Lee is older (age 10 plus). Current medication: none.
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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Describes finding it very hard to ask for help but that once her health visitor was told about her problem she had become very supportive.
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 CH04
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For 5 weeks the health visitor told her she was being over anxious about her baby's symptoms. She saw her GP & was immediately referred to hospital wh
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
>>
Child aged over 5
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Interview CH21
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Her concerns about her baby's symptoms were not taken seriously by the health visitor or her GP until she saw a different GP who noticed that she was
Their daughter was diagnosed with Total Anomalous Pulmonary Venous Circulation. She had open heart surgery at 5 months old. Current medication: none.
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