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Heart disease
Parents of children with congenital heart disease
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Discovery :
Parent's reactions
Telling others
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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
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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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Moving to the ward
Taking your child home
Pacemakers
Child's quality of life & development :
A child's quality of life
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Parents of children with congenital heart disease
Subject index
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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 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 CH14
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Describes the different reactions of friends and family and that they found it difficult to understand when information about her baby's condition or
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 over 5
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Interview CH02
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She stopped telling people about her baby's heart condition during pregnancy because it would upset them.
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 4-5
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Interview CH18
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Explain that information passed on to others about their son's heart condition had become distorted.
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 under 1
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Interview CH03
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Explains that it was difficult to know what to tell work colleagues when they were in hospital after their baby was born and outcomes and treatment op
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 over 5
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Interview CH24
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Describes how they overcame the problem when senior members of her family disagreed with the treatment her son was being offered for his heart conditi
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 CH22
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Explain that when their daughter was taken in for emergency surgery, they let others know by telling one friend who told others and who kept everyone
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
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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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Explain that some family and friends didn't understand the extent of their daughter's heart problem. Some people were afraid to ask.
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 4-5
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Interview CH17
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Describes telling friends who were shocked and frightened for them and explains that when one friend was honest with her about how she felt it was a g
Their son was diagnosed with a ventricular septal defect (VSD). Treatment: surgery to close hole and repair leaky valve at 3½ years old. No further treatment planned. Current medication: none.
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