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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:
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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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Feeding & medication :
Feeding
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Surgery & cardiac catheterisation :
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The operation
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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
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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 CH07
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They sought a second opinion so that they could decide which hospital to have their son treated at.
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 CH26
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Encourages others to have hope in the many successful treatments available nowadays for children with heart conditions.
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 CH31
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Advises parents to be well informed and to take an active part in their child's care.
Vikram was diagnosed with a large ventricular septal defect (VSD) at 3 months old. He had corrective open heart surgery to close the VSD at four and a half months old. He is recovering well and no further treatment is expected. 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 CH09
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Advises parents to trust their own instincts if they have concerns about their child's health and they are not happy with the medical advice they rece
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
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Child aged under 1
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Interview CH28
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Explains that they don't regret the decision they made to keep trying with different operations in the hope that her baby would get better.
Noah (2000-2001) was diagnosed with critical aortic stenosis at 12 hours old. He died aged 4 and a half months old following three operations to try to repair his heart. Noah spent 4 and a half months in intensive care.
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