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• Heart disease >> Parents of children with congenital heart disease >> Child aged over 5 >> Interview CH19 >> Describes using the Child Death Help Line.

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 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.

• Topic
• Heart disease >> Parents of children with congenital heart disease >> Sources of support >> Sources of support

Sources of support

• Heart disease >> Parents of children with congenital heart disease >> Bereavement, sources support & reactions of others >> Bereavement, sources support & reactions of others

Bereavement, sources of support and reactions of others

• 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 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 4-5 >> Interview CH17 >> The roles within their relationship changed and she found she needed to support her husband.

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 over 5 >> Interview CH25 >> They had different ways of coping which she explains can be difficult.

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 CH10 >> They describe their parents' reactions and explain that one of them found their reactions comforting and the other found them frustrating.

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 CH01 >> She felt like she was going through a bereavement and was cut off from the contact with midwives she could have expected in a normal pregnancy once sh

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 CH12 >> Describes the support she received from her GP.

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 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 CH13 >> Their relationship had become stronger through mutual respect and realising how reliant they were on each other.

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 CH20 >> There was no-one they could ask to baby-sit and were planning to go away together for the first time in five years after their child's successful oper

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 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 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 CH08 >> The cardiac liasion nurse was her lifeline when she was caring for her baby at home after his operation.

Daniel was diagnosed with Tricuspid Atresia, Hypoplastic Right Ventricle, VSD and Transposition of the Great Arteries. Treatment: cardiac catheter at 24 hrs old, banding operation at 2 weeks old, followed by 1st stage Fontan at 10 months old. Further catheters and surgery planned. Current medication: warfarin.

• 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 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 4-5 >> Interview CH09 >> Describes finding it very hard to ask for help but that once her health visitor was told about her problem she had become very supportive.

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 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 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 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 over 5 >> Interview CH19 >> Describes the close relationship her parents had with their grandson.

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 how her son's school reacted when he died.

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 1-3 >> Interview CH05 >> Explains how her older son had benefited from the support group his mother had joined.

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 >> Advises parents to talk to each other about their feelings and to make time for each other.

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 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 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 1-3 >> Interview CH13 >> Felt relieved that surgery had been successful but nervous about administering medicine at home. It helped to know they could phone the ward at any ti

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 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 under 1 >> Interview CH28 >> They chose not to have a post mortem after their baby died and they felt supported by the hospital in their decision.

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 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 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 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 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 >> She describes how people reacted towards her after her son's death and says that it was important that people continued to talk to her about Luke.

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 CH28 >> Describes how women she had known when she was pregnant did not know how to talk to her after her baby had died.

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 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 under 1 >> Interview CH28 >> Describes her baby's funeral at a woodland burial site and explains that at his funeral they were able to talk about Noah to friends and family who ha

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 >> Her GP had talked through and explained the pathologists report with her following her son's post mortem.

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 >> 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 CH05 >> Felt that there was a tendency in the support group she attended to focus on negative things and did not find this helpful.

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 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 CH05 >> Explains how her older son had benefited from the support group his mother had joined.

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 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 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.