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• Heart disease >> Parents of children with congenital heart disease >> Child aged over 5 >> Interview CH19 >> She tried to make medicine time fun for her son.

Luke (1996-2002) was diagnosed with coarctation of the aorta, transposition of the great arteries, VSD, pulmonary stenosis and double inlet left ventricle. He died when he was nearly 6 yrs old after his fourth operation (not including cardiac catheters). He had epilepsy and asthma and was quite ill at times. Medication: warfarin, medicines for asthma and epilepsy, diuretics after operations. Family live 15 miles from the specialist hospital.

• Heart disease >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH06 >> Describe how once they gave their daughter the wrong medicine by mistake.

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 CH20 >> Their son hates taking his medicine because it was forced on him as a baby.

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 >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH04 >> Tell how they overcame problems giving medicine to their baby - and that now she is 3 they don't let the medicines affect 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 under 1 >> Interview CH03 >> They designed a chart to record when they had given medicine to their newborn baby.

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 >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH07 >> Felt frightened at first of the responsibility of caring for their baby at home but said these feelings soon passed.

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 CH14 >> Recalls the dilemma when her baby brought up his medicine, but says it gets better as they get older and now her 3-year-old takes his medicine in the

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 CH13 >> Felt relieved that surgery had been successful but nervous about administering medicine at home. It helped to know they could phone the ward at any ti

Joshua was diagnosed with Atrioventricular Septal Defect (AVSD) and Down's syndrome. Treatment: surgery at 4 months to repair his AVSD. No further treatment planned. Current medication: aspirin.

• Heart disease >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH07 >> They organised medicine times to avoid having to wake their baby during the night.

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 CH11 >> Had problems with repeat prescriptions.

Jack was diagnosed with Supraventricular Tachycardia (SVT), which was later diagnosed as Wolff-Parkinson-White Syndrome. Treatment: none given yet. A radio-frequency catheter ablation is planned at age 5-7 years. Current medication: none, amiodarone until age 1yr.