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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 CH14
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Visiting the intensive care unit and cardiac ward before her twins were born had been very beneficial.
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
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Parents of children with congenital heart disease
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Child aged 4-5
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Interview CH18
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Their baby's serious heart condition was discovered during his routine discharge examination.
Their son was diagnosed with mirror image, transposition of the great arteries, left sided valve atresia and pulmonary stenosis. Treatment: A BT Shunt at six months old, followed by the Stage 1 Glenn procedure at 4.5 yrs. Cardiac catheter operations every 2 yrs. Further surgery is 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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She didn't bond with her baby during pregnancy because she was afraid she would lose him and would have preferred not to have discovered her baby's he
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 under 1
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Interview CH03
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Is glad that they discovered her son's complex heart condition during pregnancy, as it meant that the best possible medical care was given to him when
Their son was diagnosed with Tricuspid Atresia, a large VSD, ASD, small right ventricle and small pulmonary artery. Treatment: Modified BT Shunt and Atrial Septostomy at 24 hrs old. Cardiac catheters planned. Further operations planned when their child is older. Current medication: diuretics, aspirin, sytron, anti-reflux and lactulose.
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 CH08
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Explains that finding out at 20 weeks that her baby had a serious defect she didn't feel able to plan for his birth or the future until he was about t
Daniel was diagnosed with Tricuspid Atresia, Hypoplastic Right Ventricle, VSD and Transposition of the Great Arteries. Treatment: cardiac catheter at 24 hrs old, banding operation at 2 weeks old, followed by 1st stage Fontan at 10 months old. Further catheters and surgery 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 CH08
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Encourages other parents to be positive and have hope if they discover their child has a heart defect.
Daniel was diagnosed with Tricuspid Atresia, Hypoplastic Right Ventricle, VSD and Transposition of the Great Arteries. Treatment: cardiac catheter at 24 hrs old, banding operation at 2 weeks old, followed by 1st stage Fontan at 10 months old. Further catheters and surgery 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 CH06
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Said he found it difficult to handle the situation or to talk to people it until their baby was born.
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 under 1
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Interview CH01
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She felt like she was going through a bereavement and was cut off from the contact with midwives she could have expected in a normal pregnancy once sh
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.
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