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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:
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During pregnancy:
Scans, tests & decisions during pregnancy
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Adapting to life :
How it affects daily life
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Talking to your child about their heart
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How it affects parents
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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
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 CH20
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When their child was not intensive care they slept next to the chair or in the day ward which she had found difficult because she needed to have time
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 4-5
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Interview CH26
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Describes the parent accommodation at a hospital in Scotland where they were able to stay with their daughter while their younger daughter was in hosp
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 under 1
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Interview CH01
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Provision in the parent accommodation was not available for the first two nights when her newborn baby was transferred to the hospital for emergency s
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.
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 CH30
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Describes the parent accommodation facilities at the hospital in London which they said it had been helpful to have time away from the hospital.
Their daughter was diagnosed with pulmonary atresia, VSD, and an overiding aorta. Treatment: closed heart surgery (shunt) at 11 days old closed heart surgery (shunt) at 11 months old. Corrective open heart surgery at 2 and a half yrs 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 CH07
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Comments that their other children visited them at the accommodation which gave them a sense of normality while their child was in hospital.
Felix was diagnosed with Hypoplastic Left Ventricle, VSD, Mitral Atresia, Pulmonary Atresia, Right Atrial Isomerism, aorta arising from the right ventricle, TAPVD and Bilateral Superior Vena Cava and no spleen. Treatment: modified BT shunt (6 days old) open heart surgery (3 months and 6 months), 1st stage Fontan (10 months). Further surgery planned. Current medication: warfarin, enanapril, frusemide, 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 CH17
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Describes the parent accommodation facilities while her son was intensive care and when he moved to the ward she slept on a mattress next to his bed.
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.
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 anxieties about sibling rivalry and how the hospital made sure children had fun when they had to accompany their sibling to clinics.
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.
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