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• Heart disease >> Parents of children with congenital heart disease >> Child aged 4-5 >> Interview CH09 >> There is no specialist hospital nearby. If she has concerns she calls the specialist and she has always found that they will speak to her and answer h

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.

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• Heart disease >> Parents of children with congenital heart disease >> Dying in hospital >> Dying in hospital

Dying in hospital

• Heart disease >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH04 >> For 5 weeks the health visitor told her she was being over anxious about her baby's symptoms. She saw her GP & was immediately referred to hospital wh

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 over 5 >> Interview CH02 >> She found it difficult to cope when she brought her baby home from hospital.

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 >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH11 >> Checking her baby's pulse rate and looking after her baby became all consuming when she first brought him home from hospital.

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 over 5 >> Interview CH21 >> Explains that it was hard leaving her toddler at home when her baby was in hospital.

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 CH05 >> Comments that she found it difficult splitting her time between her children when her baby was ill and why it is important to find help from family or

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 under 1 >> Interview CH28 >> It had been important as parents to have control over what happened when their baby died 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 over 5 >> Interview CH19 >> The family spent several hours in a private room with her son when he died in hospital, which had been a very important time for them.

Luke (1996-2002) was diagnosed with coarctation of the aorta, transposition of the great arteries, VSD, pulmonary stenosis and double inlet left ventricle. He died when he was nearly 6 yrs old after his fourth operation (not including cardiac catheters). He had epilepsy and asthma and was quite ill at times. Medication: warfarin, medicines for asthma and epilepsy, diuretics after operations. Family live 15 miles from the specialist hospital.

• Heart disease >> Parents of children with congenital heart disease >> Child aged over 5 >> Interview CH19 >> Describes the practicalities in the hospital after her son died and the support given by her local chapel of rest in dealing with the arrangements.

Luke (1996-2002) was diagnosed with coarctation of the aorta, transposition of the great arteries, VSD, pulmonary stenosis and double inlet left ventricle. He died when he was nearly 6 yrs old after his fourth operation (not including cardiac catheters). He had epilepsy and asthma and was quite ill at times. Medication: warfarin, medicines for asthma and epilepsy, diuretics after operations. Family live 15 miles from the specialist hospital.

• Heart disease >> Parents of children with congenital heart disease >> Child aged under 1 >> Interview CH03 >> Have taken their baby back to the hospital when they had concerns about symptoms.

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 4-5 >> Interview CH17 >> Describes how their daughter was looked after and how she coped when her twin brother was in hospital but how difficult it is to be sure how a child i

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 CH17 >> Describes the parent accommodation facilities while her son was intensive care and when he moved to the ward she slept on a mattress next to his bed.

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 CH26 >> Describes the parent accommodation at a hospital in Scotland where they were able to stay with their daughter while their younger daughter was in hosp

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 1-3 >> Interview CH20 >> When their child was not intensive care they slept next to the chair or in the day ward which she had found difficult because she needed to have time

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 CH01 >> Provision in the parent accommodation was not available for the first two nights when her newborn baby was transferred to the hospital for emergency s

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 >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH30 >> Describes the parent accommodation facilities at the hospital in London which they said it had been helpful to have time away from the 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 1-3 >> Interview CH07 >> They sought a second opinion so that they could decide which hospital to have their son treated at.

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 >> 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 >> They felt very supported by the cardiac liaison nurse, intensive care and ward nurses.

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 CH14 >> Describes the respite support she was given for six months when her son was a baby.

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 >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH14 >> 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.

• Heart disease >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH06 >> When you are in hospital you do not believe life will ever be normal but it can be.

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 >> Comments that the hospital have always been available to speak to her when she had concerns about her baby and now that her daughter is older she find

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 CH11 >> Explains the stress they experienced when their son was in hospital and that they argued more than normal.

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 CH04 >> Describes their daughter being admitted to hospital when she was 5 weeks old and needing to have surgery within 48 hours.

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 CH22 >> 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 >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH04 >> He has to use holiday time to go to hospital appointments and she has to take unpaid leave. Her career plans have had to change.

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 CH05 >> Daily life involves many hospital appointments but doesn't hinder the quality of their family's life.

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 CH14 >> Describes anxieties about sibling rivalry and how the hospital made sure children had fun when they had to accompany their sibling to clinics.

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 >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH23 >> They took their six-year-old daughter to some appointments and check-ups so that she could see what was happening to her younger sister.

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 over 5 >> Interview CH02 >> Describes the combination of follow-up care that is available for her seven year old son.

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 >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH23 >> Describe an incident when they needed medical advice late in the evening and the local hospital were able to consult with the specialist hospital.

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 1-3 >> Interview CH14 >> 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 >> Parents of children with congenital heart disease >> Child aged under 1 >> Interview CH01 >> 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 >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH14 >> 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 >> Parents of children with congenital heart disease >> Child aged over 5 >> Interview CH02 >> Describes the combination of follow-up care that is available for her seven year old son.

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 >> 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 1-3 >> Interview CH23 >> Describe an incident when they needed medical advice late in the evening and the local hospital were able to consult with the specialist hospital.

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.