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• Heart disease >> Parents of children with congenital heart disease >> Accommodation for parents >> Accommodation for parents

Accommodation for parents

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• 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 CH25 >> Explains that she only found out from a friend at a later stage how devastated her mother was by her child's diagnosis.

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 under 1 >> Interview CH28 >> Explains that her baby's grandparents were always optimistic and positive when speaking to her while her baby was in intensive care for four and a hal

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 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 1-3 >> Interview CH22 >> Describe the impact their daughter's diagnosis had on both sets of parents.

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 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 under 1 >> Interview CH01 >> Describes fear that siblings would feel neglected when their parents were spending time at the hospital and how it helped for an older child to visit

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 over 5 >> Interview CH19 >> Explains how family, friends and acquaintances have been affected by her son's death.

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 the impact Noah's death had on his grandparents when subsequent children were born in the family.

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 >> How it affects grandparents >> How it affects grandparents

How it affects grandparents

• Heart disease >> Parents of children with congenital heart disease >> How it affects parents >> How it affects parents

How it affects parents

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

Messages to other parents

• 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 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 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 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 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 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 CH15 >> Explains that babies and children are very resilient and often cope better than parents do.

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 4-5 >> Interview CH26 >> Encourages others to have hope in the many successful treatments available nowadays for children with heart conditions.

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.

• Condition
• Heart disease >> Parents of children with congenital heart disease >> Parents of children with congenital heart disease

Publication date: May 2003        Last updated: December 2011

Review date: December 2013

 

Congenital heart disease includes a range of conditions affecting the heart from birth. In partnership with the British Heart Foundation we interviewed the parents of 30 children with congenital heart disease about their experiences during their child's early years. Select from the key topics below, choose from the full list of topics, or explore all the interviews.

• 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 CH25 >> Describes her feelings when she discovered her son had inherited hypertrophic cardiomyopathy.

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.