Monday 12 February 2018

Where to find help & support when your child has a heart defect. #CHDAwareness

It is Congenital Heart Defect Awareness Week! Both of my girls have heart defects and so do I.....A few years ago I told our story....Part one and Part two and this week I am sharing some posts all about Congenital heart defects.....


It was such a shock being told that my girls had heart defects but there is so much help and support out there....I should have asked the specialist a million questions when he told us the news but I just couldn't think....

I was told not to Google things and I understand why....When you Google a medical condition you always seem to find the worst stories and outcomes....

The best place to start is the NHS website....They have quite a bit of information which is easy to understand....

Our Cardiac liaison nurse was always at the end of the phone and always had more than enough time to talk things through with me....

Over the years I have found plenty of helpful websites:

ARC: Antenatal Results and Choices
ARC is a national charity helping parents and professionals through antenatal screening and treatment choices

The Children’s Heart Federation is dedicated to helping children with congenital or acquired heart disease and their families in Great Britain and Northern Ireland. 

Heartline offers support and information to children with heart disorders and their families, whatever the condition, wherever it is treated.

Lagan’s Foundation offers home respite and support services for young children with heart defects or feeding issues all across the UK.

Contact a Family is a national charity for families with disabled children. It provides information, advice and support, and brings families together so they can support each other.
Helpline: 0808 808 3555 - free for parents and carers (10am - 4pm Mon-Fri)

Facebook was a fantastic help to me. I was able to find a group for the ward where my girls were treated which had a great support network. There was information about nearby shops, tips and tricks about how to deal with hospital life and I got to meet other heart parents. It was nice to talk to people who were going through the same as us....

There is plenty of help and support out there. Don't feel like you are alone....

1 comment :

  1. I know what you mean about not being able to think of questions when you need to. This is a great resource for finding help

    ReplyDelete