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• 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.

• Heart disease >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH06 >> Explains the difficulty finding relevant information about their daughter's complex heart condition.

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 >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH04 >> She found information from a newspaper article through which she also discovered the Children's Heart Federation.

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 4-5 >> Interview CH18 >> They felt very alone and unsupported for the first six months after their son was diagnosed and until the time of his first operation when they got he

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 CH05 >> The way her child's doctor communicated her son' diagnosis was not helpful and suggests the way that would have been better.

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 CH26 >> Comments that the communication with cardiac care team had been excellent and that they supported them emotionally and built a close relationship with

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 4-5 >> Interview CH09 >> Explains that she sent her consultant an email detailing her questions and concerns and he called her at home the following afternoon which she said m

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 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 CH05 >> Describes how her son had found it useful reading a booklet produced by HeartLine for siblings.

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 CH10 >> She gave the nursery an information pack which she had compiled about her son's heart condition and the care needed.

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 CH11 >> Explains that her mother had found it useful to contact the national heart support organisations directly to find out information and to ask questions

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 CH10 >> Gives advice about getting the information you need from health professionals.

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 under 1 >> Interview CH31 >> 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 >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH06 >> Advises parents to talk to health professionals and other parents about the support that is available.

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 >> Parents of children with congenital heart disease >> Child aged under 1 >> Interview CH28 >> Suggests taking an active part in your child's care while in hospital.

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 4-5 >> Interview CH26 >> Explains that the whole family had found it reassuring to watch a video about pacemakers for children.

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 4-5 >> Interview CH09 >> Explains how they got a INR home testing machine and the difference it has made to their life.

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 1-3 >> Interview CH22 >> 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 >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH23 >> 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 >> Parents of children with congenital heart disease >> Child aged 4-5 >> Interview CH09 >> 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 >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH06 >> They started to explain that his baby sister had a problem when they found out during pregnancy. In spite of appearing indifferent to the information

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 >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH04 >> She didn't tell the playgroup that her daughter has a heart condition because she didn't want them to treat her any differently.

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.

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• Heart disease >> Parents of children with congenital heart disease >> Finding information >> Finding information

Finding information

• Heart disease >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH12 >> 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 >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH20 >> They found it hard taking on board information when they were told their son's diagnosis but when they came home they had lots of questions and found

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 1-3 >> Interview CH11 >> Comments that it was frustrating in the beginning not getting clear cut answers to her questions.

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 CH22 >> Describes the different sources of information they used and their usefulness.

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 >> Parents of children with congenital heart disease >> Child aged 4-5 >> Interview CH18 >> Explain their different information needs and how they managed to both get the information they needed in the way they wanted to hear it.

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 CH13 >> They didn't want too much information and chose instead to focus on spending time with their son.

Joshua was diagnosed with Atrioventricular Septal Defect (AVSD) and Down's syndrome. Treatment: surgery at 4 months to repair his AVSD. No further treatment planned. Current medication: aspirin.

• Heart disease >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH13 >> They didn't want too much information and chose instead to focus on spending time with their son.

Joshua was diagnosed with Atrioventricular Septal Defect (AVSD) and Down's syndrome. Treatment: surgery at 4 months to repair his AVSD. No further treatment planned. Current medication: aspirin.

• Heart disease >> Parents of children with congenital heart disease >> Child aged 4-5 >> Interview CH18 >> Explain their different information needs and how they managed to both get the information they needed in the way they wanted to hear it.

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.