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• Heart disease >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH14 >> Visiting the intensive care unit and cardiac ward before her twins were born had been very beneficial.

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 4-5 >> Interview CH17 >> 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 >> Parents of children with congenital heart disease >> Child aged over 5 >> Interview CH02 >> She felt very disconnected after the birth of her baby and found it difficult returning to the maternity ward without him.

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 >> Parents of children with congenital heart disease >> Child aged under 1 >> Interview CH01 >> She found it upsetting returning to the maternity ward with only one of her twins while the other was transferred to a hospital in a different city. T

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.

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• Heart disease >> Parents of children with congenital heart disease >> Moving to the ward >> Moving to the ward

Moving to the ward

• Heart disease >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH04 >> They felt very supported by the cardiac liaison nurse, intensive care and ward nurses.

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 CH31 >> Felt communication between nurses on the cardiac ward could have been better.

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 >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH20 >> Describes what it was like on the ward.

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 CH20 >> 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 >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH07 >> Describe moving from a one to one intensive care environment to the high dependency unit of the ward.

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 over 5 >> Interview CH02 >> Explains how she became more involved in her baby's care when he moved to the ward.

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 >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH13 >> They were expecting their baby to be looking better when he was moved on to the ward and were distressed to find he looked worse because he was being

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 CH20 >> Describe the quick recovery of their son and of other children on the ward after their open-heart surgery.

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 4-5 >> Interview CH17 >> Describe the delay in returning home because of fluid around their son's heart after his open-heart surgery.

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.