Address details

Down Syndrome NSW
Level 6/410 Church St, North Parramatta
9am-5pm Monday - Thursday
T: 9841 444

Wednesday, 13 July 2011

Website of the week: Down's Heart Group

About half of all babies born with Down syndrome also have  congenital heart condition (commonly known as a 'hole in the heart').  While almost all of those conditions will be corrected by surgery or will heal without interference, dealing with a heart condition, with heart surgery and other treatment is often overwhelming for parents, and Down syndrome might be a secondary consideration while it is taken care of. A very few congenital heart conditions will be ongoing, and the availability of ongoing support for families is important.

Down's Heart Group is a long-established UK  charitable organisation that provides information and support specifically about the range of heart conditions that can occur in people with Down syndrome of all ages. 

Information is provided from a parent's perspective, and  checked for accuracy with appropriate medical professionals. It includes the expected qualification that "... information provided on this website is to assist with understanding only and should never be used as a substitute for professional medical opinion.

While some information is specific to the UK, much of it is useful to families anywhere.

This well researched website can complement support offered in relation to Down syndrome alone and to heart conditions alone, at times when both or either can be very challenging for families.

1 comment:

Penny Green said...

Thanks so much for featuring our website as your 'website of the week' and helping us reach more families.

As you say we are a UK organisation, but we very much believe in sharing knowledge and experience across the global DS community and we are always happy to do what we can to help our overseas friends too. We also have a presence on Facebook and have just started collaboration with a new website 'Future of Downs' where we are moderating their heart forum.

So if you have an interest in heart issues related to Down's Syndrome, whatever the age of the person, do check out the links and I hope you will join us.