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Heart disease
Parents of children with congenital heart disease
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Feeding & medication :
Feeding
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Surgery & cardiac catheterisation :
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Parents of children with congenital heart disease
Subject index
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Heart disease
>>
Parents of children with congenital heart disease
>>
Child aged 1-3
>>
Interview CH11
>>
Explains that her baby who had SVT never had any problems feeding.
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.
Heart disease
>>
Parents of children with congenital heart disease
>>
Child aged 1-3
>>
Interview CH07
>>
She overcame her baby's feeding problems by using a combination of breast-feeding, expressed milk by oral syringe and supplements.
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 CH21
>>
Describes the problems she had with feeding her baby and recalls that the health visitors didn't detect the real nature of her problem.
Their daughter was diagnosed with Total Anomalous Pulmonary Venous Circulation. She had open heart surgery at 5 months old. Current medication: none.
Heart disease
>>
Parents of children with congenital heart disease
>>
Child aged 1-3
>>
Interview CH14
>>
Describes the battle she had feeding her newborn baby but said it got better when he went on to solids.
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 CH07
>>
She tried different bottles and teats which she got from CLAPA, but found that oral syringes worked best for her baby.
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 CH04
>>
They monitored their baby's feeds on a 24 hour chart, which had helped them to feel that they were making some progress with bottle feeding.
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 over 5
>>
Interview CH21
>>
Describes the problems she had with feeding her baby and recalls that the health visitors didn't detect the real nature of her problem.
Their daughter was diagnosed with Total Anomalous Pulmonary Venous Circulation. She had open heart surgery at 5 months old. Current medication: none.
Heart disease
>>
Parents of children with congenital heart disease
>>
Child aged over 5
>>
Interview CH24
>>
She expressed milk when her baby was in hospital, and successfully breast-fed and explains the problem she had with excess milk production.
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 1-3
>>
Interview CH07
>>
She overcame her baby's feeding problems by using a combination of breast-feeding, expressed milk by oral syringe and supplements.
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 CH05
>>
Suggests focusing on one positive aspect.
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 CH11
>>
Explains that her baby who had SVT never had any problems feeding.
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.
Heart disease
>>
Parents of children with congenital heart disease
>>
Child aged 1-3
>>
Interview CH07
>>
She overcame her baby's feeding problems by using a combination of breast-feeding, expressed milk by oral syringe and supplements.
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.
Topic
Heart disease
>>
Parents of children with congenital heart disease
>>
Feeding
>>
Feeding
Feeding
Heart disease
>>
Parents of children with congenital heart disease
>>
Child aged 1-3
>>
Interview CH14
>>
Describes the battle she had feeding her newborn baby but said it got better when he went on to solids.
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 over 5
>>
Interview CH24
>>
She expressed milk when her baby was in hospital, and successfully breast-fed and explains the problem she had with excess milk production.
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 1-3
>>
Interview CH07
>>
She tried different bottles and teats which she got from CLAPA, but found that oral syringes worked best for her baby.
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 CH04
>>
They monitored their baby's feeds on a 24 hour chart, which had helped them to feel that they were making some progress with bottle feeding.
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 CH01
>>
Explains that feeding by NG tube was a tiring and time consuming process.
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.
Heart disease
>>
Parents of children with congenital heart disease
>>
Child aged under 1
>>
Interview CH03
>>
Explains that strangers made comments about her baby's NG tube which she sometimes found upsetting.
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 CH15
>>
It was difficult weaning her baby on to solids because she had difficulty chewing which she thinks is because she was fed by NG tube for a long time a
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 4-5
>>
Interview CH09
>>
They were able to feed and care for their child when he was in intensive care. Staff were always friendly and helpful.
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 over 5
>>
Interview CH21
>>
Describes the problems she had with feeding her baby and recalls that the health visitors didn't detect the real nature of her problem.
Their daughter was diagnosed with Total Anomalous Pulmonary Venous Circulation. She had open heart surgery at 5 months old. Current medication: none.
Heart disease
>>
Parents of children with congenital heart disease
>>
Child aged under 1
>>
Interview CH01
>>
Explains that feeding by NG tube was a tiring and time consuming process.
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.
Heart disease
>>
Parents of children with congenital heart disease
>>
Child aged 1-3
>>
Interview CH04
>>
They monitored their baby's feeds on a 24 hour chart, which had helped them to feel that they were making some progress with bottle feeding.
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 CH14
>>
Describes the battle she had feeding her newborn baby but said it got better when he went on to solids.
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 CH07
>>
She overcame her baby's feeding problems by using a combination of breast-feeding, expressed milk by oral syringe and supplements.
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.
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