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Heart disease
Parents of children with congenital heart disease
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Discovery :
Parent's reactions
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After birth:
Signs, symptoms & diagnosis after birth
During pregnancy:
Scans, tests & decisions during pregnancy
Preparing for birth & labour
Adapting to life :
How it affects daily life
Follow-up
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Talking to your child about their heart
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How it affects parents
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How it affects siblings
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Feeding
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The death of a child :
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Bereavement, sources support & reactions of others
Surgery & cardiac catheterisation :
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Parents of children with congenital heart disease
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Heart disease
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Parents of children with congenital heart disease
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Child aged under 1
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Interview CH31
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Describes feelings of fear, disbelief and anger when his 3 month old son was diagnosed with a Ventricular Septal Defect (VSD).
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
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Parents of children with congenital heart disease
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Child aged 4-5
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Interview CH26
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Encourages others to have hope in the many successful treatments available nowadays for children with heart conditions.
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
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Parents of children with congenital heart disease
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Child aged under 1
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Interview CH31
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Advises parents to be well informed and to take an active part in their child's care.
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
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Parents of children with congenital heart disease
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Child aged under 1
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Interview CH28
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CHD was diagnosed soon after birth. Describes having to follow their baby who had been transferred by ambulance for emergency surgery in the early hou
Noah (2000-2001) was diagnosed with critical aortic stenosis at 12 hours old. He died aged 4 and a half months old following three operations to try to repair his heart. Noah spent 4 and a half months in intensive care.
Heart disease
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Parents of children with congenital heart disease
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Child aged 1-3
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Interview CH22
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Describe how their daughter was admitted to hospital for emergency surgery when she was three weeks old.
Millie was diagnosed with Coarctation of the Aorta and a VSD at 3 weeks old. Treatment: she had closed heart surgery to repair the coarctation and a band was put around the pulmonary artery at 3 weeks old. At 7 months old she had open heart surgery to repair her VSD. Current medication: captopril.
Heart disease
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Parents of children with congenital heart disease
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Child aged 1-3
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Interview CH22
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Describe making sure their older child's needs were met when their baby was admitted to hospital for emergency surgery.
Millie was diagnosed with Coarctation of the Aorta and a VSD at 3 weeks old. Treatment: she had closed heart surgery to repair the coarctation and a band was put around the pulmonary artery at 3 weeks old. At 7 months old she had open heart surgery to repair her VSD. Current medication: captopril.
Heart disease
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Parents of children with congenital heart disease
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Child aged 1-3
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Interview CH23
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The staff were very good at explaining what was happening when their newborn baby was transferred in the middle of the night to the specialist hospita
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.
Heart disease
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Parents of children with congenital heart disease
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Child aged 4-5
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Interview CH09
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Describes learning of the diagnosis as the investigations were being carried out and discovering their baby needed to have surgery within a few days.
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
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Parents of children with congenital heart disease
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Child aged 1-3
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Interview CH12
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Information given to them by the fetal cardiologist had helped them to feel prepared for their baby's birth and at birth her baby was able to stay wit
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
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Parents of children with congenital heart disease
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Child aged under 1
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Interview CH03
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She chose a natural birth because she felt it was the one thing she could do to help her 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
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Parents of children with congenital heart disease
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Child aged 1-3
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Interview CH14
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Explains that it was very hard and upsetting being separated from one of her babies after birth.
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
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Parents of children with congenital heart disease
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Child aged over 5
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Interview CH02
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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
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Parents of children with congenital heart disease
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Child aged under 1
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Interview CH01
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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.
Heart disease
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Parents of children with congenital heart disease
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Child aged 1-3
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Interview CH10
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She found it difficult not being able to do the first things for her newborn baby when he was transferred to another hospital shortly after birth.
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
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Parents of children with congenital heart disease
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Child aged 1-3
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Interview CH06
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They were worried that sufficient medical support might not be available when their baby was born but the birth had gone very smoothly.
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
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Parents of children with congenital heart disease
>>
Child aged 1-3
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Interview CH06
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They were worried that sufficient medical support might not be available when their baby was born but the birth had gone very smoothly.
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
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Parents of children with congenital heart disease
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Child aged over 5
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Interview CH24
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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
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Parents of children with congenital heart disease
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Child aged under 1
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Interview CH03
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She chose a natural birth because she felt it was the one thing she could do to help her 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
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Parents of children with congenital heart disease
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Child aged 1-3
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Interview CH14
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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.
Topic
Heart disease
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Parents of children with congenital heart disease
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Preparing for birth & labour
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Preparing for birth & labour
Preparing for birth & labour
Heart disease
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Parents of children with congenital heart disease
>>
Child aged 1-3
>>
Interview CH12
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Information given to them by the fetal cardiologist had helped them to feel prepared for their baby's birth and at birth her baby was able to stay wit
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
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Parents of children with congenital heart disease
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Signs, symptoms & diagnosis after birth
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Signs, symptoms & diagnosis after birth
Signs, symptoms & diagnosis after birth
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