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 CH08
>>
Differences in reaction to paediatric intensive care ward between husband and wife.
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
>>
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 4-5
>>
Interview CH17
>>
Surprised to find how calm and reassuring everything was on the PICU. Regretted not having visited it before he had his operation. Very different from
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 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 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 1-3
>>
Interview CH04
>>
Describes her daughter's slow recovery in intensive care and how she finally came off the ventilator.
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 CH09
>>
They were able to feed and care for their child when he was in intensive care. Staff were always friendly and helpful.
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 CH07
>>
Describes the post-op complications their baby had when he was in intensive care after two of his operations.
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 over 5
>>
Interview CH24
>>
She showed her son photos of when he was intensive care as a baby when he was over six years old and she describes his reactions.
Their son was diagnosed with Bradycardia during pregnancy. A VSD, PDA and a double aortic arch were diagnosed when he was 3 weeks old. Treatment: surgery at 8 weeks old to correct double aortic arch and to close pulmonary duct artery. Increasing drop in heartbeat (Bradycardia) led to emergency pacemaker fitted at 6yrs old. Current medication: none.
Topic
Heart disease
>>
Parents of children with congenital heart disease
>>
Paediatric intensive care
>>
Paediatric intensive care
Paediatric intensive care
Heart disease
>>
Parents of children with congenital heart disease
>>
Child aged 1-3
>>
Interview CH23
>>
Recall that the calm atmosphere in intensive care before their baby was taken in to theatre for emergency surgery had helped them not to panic. This h
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 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.
Mail to a friend