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• Heart disease >> Parents of children with congenital heart disease >> Messages to other parents >> Messages to other parents

Messages to other parents

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• Heart disease >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH20 >> They found it supportive to talk to other parents and see other children at follow-up appointments when their son was a baby.

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 >> Parents of children with congenital heart disease >> Child aged under 1 >> Interview CH28 >> She had emailed other bereaved parents through the Compassionate Friends website, which had helped her to feel less alone.

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 >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH30 >> Describes the benefits of the pre-admission day and visiting paediatric intensive care before their daughter was in hospital.

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 under 1 >> Interview CH03 >> Describes the benefits of talking to other parents.

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 under 1 >> Interview CH03 >> Describes the benefits of going on a charity open day and meeting people who had experience of what they were going to have to go through.

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 CH04 >> The best support she received was talking to another parent whose child had congenital heart disease.

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 CH10 >> They found that doctors provided a clinical picture but it was other parents who could offer information on what day to day life would be like with a

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 >> She finds the Heart Link Newsletter helpful in providing information and support.

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.