The Information centre is a resource that is created by the users of Parentsown.co.uk.
If you have information (white papers, useful links, studies, advice etc) that you think other parents could benefit from add a page (using the link below) to create a new page in the Heart Disease Information centre book.
All links will automatically turn in to a web link, and you can attach files (pdf's, Word documents etc) if you wish.
The more pages we add the more information there will be for parents to search on.
If your child is taking ACE Inhibitors then you may find the following article interesting - it's written by UCL Institute of Child Health - and covers what ACE Inhibitors are, how they work, how to take them and possible side effects.
To read the full article visit:
http://www.ich.ucl.ac.uk/gosh_families/information_sheets/medicines_ace_...
UCL Institute of Child Health have produced an information leaflet for parents whose child is having a cardiac catheterisation at Great Ormond Street Hospital but it may be useful reading for any parent whose child is waiting for one. It covers what a cardiac catheterisation is and what happens before, during and after the procedure
You can read the leaflet by following this link:
http://www.ich.ucl.ac.uk/gosh_families/information_sheets/cardiac_cathet...
UCL Institute of Child Health have produced an information leaflet for parents at Great Ormond Street Hospital but the leaflet may be useful for all parents whose child may need Cardiac ECMO.
The leaflet covers: what ECMO is and how it works, what to expect and the care of your child and aftercare.
You can read the full leaflet by following this link:
http://www.ich.ucl.ac.uk/gosh_families/information_sheets/ecmo_cardiac/e...
If your child is waiting for a cardiac MRI then you may want to read the following UCL Institute of Child Health information sheets. Although written for parents at Great Ormond Street Hospital, it may be helpful to other parents -just bare in mind that procedures may differ at other hospitals.
The two leaflets cover what a cardiac MRI is, use of anaesthesia, what happens during the scan and what happens after.
To read the information sheets follow these links:
http://www.ich.ucl.ac.uk/gosh_families/information_sheets/mri_cardiac_ge...
http://www.ich.ucl.ac.uk/gosh_families/information_sheets/mri_cardiac_no...
If your child has just been diagnosed with a heart murmur and you want to find out more then then check out some of these sites:
http://www.childrensheartinstitute.org/educate/murmur/murmur.htm
http://www.patient.co.uk/doctor/Heart-Murmurs-in-Children.htm
The British Heart Foundation have a great factsheet too:
http://www.bhsoc.org/bhf_factfiles/bhf_factfile_oct_2001.pdf
There is an article by Great Ormond Street Hospital which may be helpful for some parents who are caring for a very sick child in hospital. It covers financial help, hospital accommodation and parking and support groups….
To read the full article visit - http://www.childrenfirst.nhs.uk/families/features/hospital_life/coping_s...
If your child is waitint for an echocardiogram using sedation then you may want to read the UCL Institute of Child Health information leaflet. Although written for parents at Great Ormond Street Hospital, it may be useful for other parents. The sheet covers what to expect during the scan and gives useful information about what to expect afterwards.
To read the information sheet, follow this link:
http://www.ich.ucl.ac.uk/gosh_families/information_sheets/echocardiogram...
Childrens heart federation
http://www.childrens-heart-fed.org.uk/news/detail.cfm?contentid=86
British Heart Foundation
www.bhf.org.uk
020 79350185