A child's quality of life

Daniel was diagnosed with Tricuspid Atresia, Hypoplastic Right Ventricle, VSD and Transposition of the Great Arteries. Treatment: cardiac catheter at 24 hrs old, banding operation at 2 weeks old, followed by 1st stage Fontan at 10 months old. Further catheters and surgery planned. Current medication: warfarin.

Heart disease >> Parents of children with congenital heart disease >> Child aged 4-5 >> Interview CH16 >> Her 5 year old daughter who has pulmonary stenosis has plenty of energy and goes to tennis lessons, swimming lessons and dancing every week.

Eleanor was diagnosed with pulmonary stenosis. Treatment: a balloon catheter operation at six weeks old. No further treatment planned. Current medication: none.

Heart disease >> Parents of children with congenital heart disease >> Child aged over 5 >> Interview CH19 >> Describes how her son managed to come first in the running race at the school sport day.

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 over 5 >> Interview CH19 >> Explains that her son had a very good quality of life, even though he had a serious heart condition and was very ill.

Heart disease >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH10 >> Their son has many colds leading to coughing and vomiting during the winter months but this is less of a problem now he is older.

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 CH10 >> Explains that their son who has not yet had surgery, is not able to join in with all the things he would like to. He tends to crouch when he needs to

Heart disease >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH14 >> She comments that her son knows his physical limitations and he'll sit down and do a jigsaw or puzzle.

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 CH26 >> Explains that the pacemaker her daughter has, which is used as a back up if her heartbeat becomes too slow, is very small and she leads a perfectly no

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 >> Parents of children with congenital heart disease >> Child aged over 5 >> Interview CH25 >> Explains that it is difficult to get the right balance in letting her son who has hypertrophic cardiomyopathy lead a normal life but not put himself a

Andre was diagnosed with Hypertrophic Cardiomyopathy at 3 months old. Treatment: he takes Verapamil and has to limit his physical activities. He has annual check ups. Her 6 month old daughter has a VSD, diagnosed when she was 3 months old. It is expected that the hole will close on it's own, without the need for treatment.

Heart disease >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH07 >> This 3 year old is severely limited by a complex heart condition; gets out of breath easily, poor circulation, can't walk far, has to avoid accidents

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 CH15 >> Explains that babies and children are very resilient and often cope better than parents do.

Taylor was diagnosed with a complete Atrioventricular septal defect (AVSD). Treatment: surgery at 6 months old. No further treatment planned. Current medication: none.

Heart disease >> Parents of children with congenital heart disease >> Child aged over 5 >> Interview CH24 >> Describes the physical improvements in her son's health following his pacemaker operation.

Their son was diagnosed with Bradycardia during pregnancy. A VSD, PDA and a double aortic arch were diagnosed when he was 3 weeks old. Treatment: surgery at 8 weeks old to correct double aortic arch and to close pulmonary duct artery. Increasing drop in heartbeat (Bradycardia) led to emergency pacemaker fitted at 6yrs old. Current medication: none.

Heart disease >> Parents of children with congenital heart disease >> Child aged 4-5 >> Interview CH09 >> Her 5 year old son who had a complex heart condition has plenty of energy, is very outgoing and can stand up for himself at school.

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 >> Parents of children with congenital heart disease >> Child aged 4-5 >> Interview CH09 >> Explains that her son was proudly showing off his scar to everybody when he was around at a friends house for tea.

Heart disease >> Parents of children with congenital heart disease >> Child aged over 5 >> Interview CH02 >> Explain that quality of life was an important factor in their decision to proceed with her pregnancy.

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.

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