home
a-z of conditions
forums
news
about us
See all conditions
Heart disease
Parents of children with congenital heart disease
Forum
Resources & Information
Subject index
Credits
Full list of topics
Discovery :
Parent's reactions
Telling others
Your ideas about causes
Finding information
Sources of support
Talking to health professionals
After birth:
Signs, symptoms & diagnosis after birth
During pregnancy:
Scans, tests & decisions during pregnancy
Preparing for birth & labour
Adapting to life :
How it affects daily life
Follow-up
Coping
Talking to your child about their heart
Financial concerns
Messages to other parents
Impact on family
How it affects parents
How it affects relationships
How it affects siblings
How it affects grandparents
Feeding & medication :
Feeding
Medication
The death of a child :
Dying in hospital
Funeral, post mortem & inquest
Bereavement, sources support & reactions of others
Surgery & cardiac catheterisation :
Emergency surgery
Waiting for an operation
The operation
Accommodation for parents
Paediatric intensive care
Moving to the ward
Taking your child home
Pacemakers
Child's quality of life & development :
A child's quality of life
A child's development
Search the whole site
Search in this condition
Parents of children with congenital heart disease
Subject index
Clip
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 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 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 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 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 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
>>
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
>>
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.
Topic
Heart disease
>>
Parents of children with congenital heart disease
>>
How it affects grandparents
>>
How it affects grandparents
How it affects grandparents
Mail to a friend