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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:
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 over 5
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Interview CH24
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Describes what her son's pacemaker operation and recovery was like.
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 over 5
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Interview CH02
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When her son was a baby he was late to reach all his milestones but there had been no long term effect.
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 over 5
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Interview CH19
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Her son had a one-to-one helper at school and when he went to school with his NG tube the other children accepted it.
Luke (1996-2002) was diagnosed with coarctation of the aorta, transposition of the great arteries, VSD, pulmonary stenosis and double inlet left ventricle. He died when he was nearly 6 yrs old after his fourth operation (not including cardiac catheters). He had epilepsy and asthma and was quite ill at times. Medication: warfarin, medicines for asthma and epilepsy, diuretics after operations. Family live 15 miles from the specialist hospital.
Heart disease
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Parents of children with congenital heart disease
>>
Child aged over 5
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Interview CH19
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Describes how her son managed to come first in the running race at the school sport day.
Luke (1996-2002) was diagnosed with coarctation of the aorta, transposition of the great arteries, VSD, pulmonary stenosis and double inlet left ventricle. He died when he was nearly 6 yrs old after his fourth operation (not including cardiac catheters). He had epilepsy and asthma and was quite ill at times. Medication: warfarin, medicines for asthma and epilepsy, diuretics after operations. Family live 15 miles from the specialist hospital.
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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Her 5 year old son who had a complex heart condition has plenty of energy, is very outgoing and can stand up for himself at school.
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
>>
Child aged over 5
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Interview CH19
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Describes how her son's school reacted when he died.
Luke (1996-2002) was diagnosed with coarctation of the aorta, transposition of the great arteries, VSD, pulmonary stenosis and double inlet left ventricle. He died when he was nearly 6 yrs old after his fourth operation (not including cardiac catheters). He had epilepsy and asthma and was quite ill at times. Medication: warfarin, medicines for asthma and epilepsy, diuretics after operations. Family live 15 miles from the specialist hospital.
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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Her son is getting on very well at school and enjoying it.
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
>>
Parents of children with congenital heart disease
>>
Child aged over 5
>>
Interview CH02
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How taking warfarin affected her son's school life.
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.
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