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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:
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
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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
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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 CH04
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Comments that the hospital have always been available to speak to her when she had concerns about her baby and now that her daughter is older she find
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 CH20
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They found it supportive to talk to other parents and see other children at follow-up appointments when their son was a baby.
Toby was diagnosed with Tetralogy of Fallots and mild branch pulmonary stenosis at six weeks old. Treatment: he had a catheter at 6 months old and corrective open heart surgery at 8 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 CH24
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Comments that follow-up appointments have got easier with time.
Their son was diagnosed with Bradycardia during pregnancy. A VSD, PDA and a double aortic arch were diagnosed when he was 3 weeks old. Treatment: surgery at 8 weeks old to correct double aortic arch and to close pulmonary duct artery. Increasing drop in heartbeat (Bradycardia) led to emergency pacemaker fitted at 6yrs 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 CH13
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Follow-up appointments remind them of what their son has gone through and his mother says she feels very nervous beforehand.
Joshua was diagnosed with Atrioventricular Septal Defect (AVSD) and Down's syndrome. Treatment: surgery at 4 months to repair his AVSD. No further treatment 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 CH02
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Describes the combination of follow-up care that is available for her seven year old son.
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 CH12
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Explains that her two year old daughter was okay about being at the hospital outpatients but she didn't like having the Echocardiogram done.
Their daughter was diagnosed with ostium primum Atrial Septal Defect (ASD). Treatment: Surgery at 18 months old to close the hole with a dacron patch. Stitches in the mitral valve. No further surgery planned. Current medication: none.
Heart disease
>>
Parents of children with congenital heart disease
>>
Child aged 1-3
>>
Interview CH12
>>
Explains that her two year old daughter was okay about being at the hospital outpatients but she didn't like having the Echocardiogram done.
Their daughter was diagnosed with ostium primum Atrial Septal Defect (ASD). Treatment: Surgery at 18 months old to close the hole with a dacron patch. Stitches in the mitral valve. No further surgery planned. Current medication: none.
Heart disease
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Parents of children with congenital heart disease
>>
Child aged over 5
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Interview CH25
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They try to make follow-up appointments fun when the whole family go for check-ups for hypertrophic cardiomyopathy.
Andre was diagnosed with Hypertrophic Cardiomyopathy at 3 months old. Treatment: he takes Verapamil and has to limit his physical activities. He has annual check ups. Her 6 month old daughter has a VSD, diagnosed when she was 3 months old. It is expected that the hole will close on it's own, without the need for treatment.
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