How it affects daily life

Their daughter was diagnosed with ostium primum Atrial Septal Defect (ASD). Treatment: Surgery at 18 months old to close the hole with a dacron patch. Stitches in the mitral valve. No further surgery planned. Current medication: none.

Heart disease >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH14 >> She didn't leave her son with anyone for the first two years and they went out less as a family because of her son's susceptibility to the cold and in

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 >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH04 >> Their daughter's truncus arteriosus does not have any practical impact on their daily life.

Their daughter was diagnosed with Truncus Arteriosus. Treatment: Surgery at 5 weeks old to fit a conduit and repair the hole. Cardiac catheterisation planned for pre-school. Current medication: captopril.

Heart disease >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH05 >> Daily life involves many hospital appointments but doesn't hinder the quality of their family's life.

Joe was diagnosed with Di-George Syndrome and Tetralogy of Fallots. Treatment: one operation at 3 weeks old, 10 months and at 18 months old. Current medication: none.

Heart disease >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH06 >> When you are in hospital you do not believe life will ever be normal but it can be.

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 >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH07 >> Their baby needed constant oxygen. It was made available all over their house and they insisted on being provided with small cylinders to use outside

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 >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH07 >> Describes impact on their home life when their son was in hospital and later having to make frequent hospital visits.

Heart disease >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH10 >> Their involvement in community life has decreased because their son was often ill and was susceptible to infections.

Their son was diagnosed with Transposition of the Great Arteries, ASD, VSD, Atrial Isomerism and Pulmonary Stenosis. He has Dextro cardia and Bronchial Isomerism. Treatment: none given yet, surgery planned for when their son is older. Current medication: ventolin & flixotide for asthma.

Heart disease >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH23 >> Their daily life was more home based before their daughter had her corrective surgery but now after surgery it had returned to normal.

Caitlan was diagnosed with Pulmonary Atresia, VSD and Dextro cardia. Treatment: closed heart surgery at 48 hrs old and open heart surgery at 11 months old. Further surgery planned when their daughter is older. Current medication: none.

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