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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 CH10
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Describes feeling numb, devastated and shock when his wife told him that their unborn baby had a heart defect.
Their son was diagnosed with Transposition of the Great Arteries, ASD, VSD, Atrial Isomerism and Pulmonary Stenosis. He has Dextro cardia and Bronchial Isomerism. Treatment: none given yet, surgery planned for when their son is older. Current medication: ventolin & flixotide for asthma.
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 CH26
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Describes feelings of 'why us', shock, anger and relief when her daughter was diagnosed with a partial atrio ventricular septal defect at 2 and half y
Her daughter was diagnosed with Partial Ventricular Septal Defect after GP noticed a heart murmur when she was two. Treatment: open heart surgery to repair hole and mend the valve at 2½ yrs old. Pacemaker fitted 5 days after surgery. Possibility of further surgery in the future. 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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Describes their daughter being admitted to hospital when she was 5 weeks old and needing to have surgery within 48 hours.
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 CH22
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Describe how their daughter was admitted to hospital for emergency surgery when she was three weeks old.
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.
Heart disease
>>
Parents of children with congenital heart disease
>>
Child aged 4-5
>>
Interview CH09
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Describes learning of the diagnosis as the investigations were being carried out and discovering their baby needed to have surgery within a few days.
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.
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