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• Heart disease >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH30 >> She had made a conscious effort to make time for her husband and to talk to each other rather than just relating in the context of their ill child.

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 >> Parents of children with congenital heart disease >> Child aged 4-5 >> Interview CH26 >> They weren't able to share their feelings and talk to each other about their daughter's illness which she feels contributed to her marriage breakdown.

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 CH21 >> Describes how she talked to her daughter in stages about her heart condition.

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 CH15 >> 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 >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH05 >> 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 >> Parents of children with congenital heart disease >> Child aged 4-5 >> Interview CH18 >> Explain that they try to make hospital appointments fun.

Their son was diagnosed with mirror image, transposition of the great arteries, left sided valve atresia and pulmonary stenosis. Treatment: A BT Shunt at six months old, followed by the Stage 1 Glenn procedure at 4.5 yrs. Cardiac catheter operations every 2 yrs. Further surgery is planned. Current medication: aspirin.

• Heart disease >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH29 >> Explains what she told her 3 year old son about his Wolff-Parkinson-White Syndrome.

Lee was diagnosed with Wolff-Parkinson-White Syndrome. Treatment: Flecainide up until 14 months old. Possibility of radio frequency ablation when Lee is older (age 10 plus). Current medication: none.

• Heart disease >> Parents of children with congenital heart disease >> Child aged over 5 >> Interview CH24 >> She showed her son photos of when he was intensive care as a baby when he was over six years old and she describes his reactions.

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 over 5 >> Interview CH25 >> Explains that she found it difficult talking to her son about the risks involved with his genetic heart condition.

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 CH30 >> Describes how they told their two and a half year old daughter about her heart condition and her operation.

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 >> Parents of children with congenital heart disease >> Child aged 4-5 >> Interview CH17 >> 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 >> Parents of children with congenital heart disease >> Child aged 4-5 >> Interview CH09 >> 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.

• Topic
• Heart disease >> Parents of children with congenital heart disease >> Talking to health professionals >> Talking to health professionals

Talking to health professionals

• Heart disease >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH12 >> Describes the effect on her son of his younger sister's heart condition.

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 >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH07 >> They feel their older children have adapted well and they haven't suffered any long-term adverse affects.

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 >> Talking to your child about their heart >> Talking to your child about their heart

Talking to your child about their heart