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Heart disease
Parents of children with congenital heart disease
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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 4-5
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Interview CH16
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A mother of a child with pulmonary stenosis describes their experience of their daughter's balloon catheter operation.
Eleanor was diagnosed with pulmonary stenosis. Treatment: a balloon catheter operation at six weeks old. No further treatment planned. Current medication: none.
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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Describes what her son's pacemaker operation and recovery was like.
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 1-3
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Interview CH07
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Describes the post-op complications their baby had when he was in intensive care after two of his operations.
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
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Parents of children with congenital heart disease
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Child aged 1-3
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Interview CH20
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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
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Parents of children with congenital heart disease
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Child aged 4-5
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Interview CH17
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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.
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 CH15
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Describes what she told her 3 year old daughter about the scar she has down her chest.
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
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Parents of children with congenital heart disease
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Child aged 1-3
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Interview CH05
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Explains why she felt it was important to talk to her one year old son before he had his surgery.
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
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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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Their daily life was more home based before their daughter had her corrective surgery but now after surgery it had returned to normal.
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 1-3
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Interview CH12
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Describes the temporary impact on their daily life around the time of their daughter's operation to correct her ostium primum atrial septal defect and
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 1-3
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Interview CH20
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She had to take holiday leave when her son was having his operation and make up her hours and advises other parents to get a certificate from their GP
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
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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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They felt they were in limbo while they were waiting for an operation date.
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 1-3
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Interview CH10
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Their son has still to have his first operation and they feel uncertain about the future but cope by enjoying the present.
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 CH20
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They explain their feelings when their son's operation was cancelled three times.
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
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Parents of children with congenital heart disease
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Child aged 4-5
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Interview CH17
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Explain that not telling their son that he was going in to hospital to have an operation had worked well.
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
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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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Explains why she thinks it was a mistake not telling her toddler that he was going in to hospital to have an operation.
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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Explains that it's difficult as a parent to consent to surgery when your child is happy and well.
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 CH31
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Explain how they learnt to adjust to the idea that their son would need to have surgery.
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 CH17
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They felt relieved when their son was having his surgery because it would soon be over.
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
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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 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 4-5
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Interview CH17
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Describe the emotions they had before their son's operation.
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
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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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Describe what they did and how they felt when their daughter was having her operation.
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 4-5
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Interview CH26
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Describes how she felt about her daughter having a pacemaker implanted.
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 4-5
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Interview CH09
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Explain that his condition was so serious that there was no time to consider any option other than to have an operation.
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 CH14
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Describes mixed emotions of wanting her son to have got his operation over with while on the other hand wanting it never to happen.
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 1-3
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Interview CH06
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Parents of a child with multiple cardiac problems describe how they felt before their daughter's second operation and how they coped.
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 1-3
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Interview CH22
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Describe what it was like when their daughter's operation to correct her VSD was cancelled four times. They recognise that difficult as it was for the
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 CH12
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Explains making the decision to consent to their daughter's operation.
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 1-3
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Interview CH20
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Describes being told the risks of their son's operation and signing the consent form.
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
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Parents of children with congenital heart disease
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Child aged 1-3
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Interview CH30
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Describes taking their toddler to the anaesthetic room for her operation and how they were able to make it a less traumatic experience for her.
Their daughter was diagnosed with pulmonary atresia, VSD, and an overiding aorta. Treatment: closed heart surgery (shunt) at 11 days old closed heart surgery (shunt) at 11 months old. Corrective open heart surgery at 2 and a half yrs old. Current medication: none.
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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He found taking his daughter to the anesthetists room rewarding because he was able to meet the surgeon and anesthetist again.
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 CH20
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When their son was having his operation they went to the nearby museum. They advise other parents to be prepared because sometimes operations take lon
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
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Parents of children with congenital heart disease
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Child aged 1-3
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Interview CH07
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Describes impact on their home life when their son was in hospital and later having to make frequent hospital visits.
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
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Parents of children with congenital heart disease
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The operation
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The operation
The operation
Heart disease
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Parents of children with congenital heart disease
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Waiting for an operation
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Waiting for an operation
Waiting for an operation
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