About Us

Where are we and What do we do?

We are based in the South
To support and help adults, young people, children and their families ALL over the UK.

The reason behind this website:
The founder who founded CHD-UK and is an ACHD (adult CHD’er) / GUCH (Grown up with Congenital Heart) and is now one of many thousands who have survived to adulthood.  We do not know the outcome but this website is here to help educate more people about CHD and to raise awareness, and to support and help adults, young people, children and their families ALL over the UK.   There are still many babies being born today with CHD but now have a greater chance of surviving than they did 30 – 40 years ago.

The Founder, Hazel was born with one TYPE of CHD, and was one of the blue babies due to being born with what is called Transposition of the Great Arteries (TGA), well it is NOT CURED only fixed and she will have problems in the forseeable future but hey she lives life to the full.

Chair: Jackie Hill
Treasurer: Helen Riley
Secretary

Our Coordinators:
Jackie Hill, Scotland Coordinator and Chair for CHD-UK

I am Jackie, 38, born with Tetrology of Fallot, which was repaired by the age of 3, but I will need further surgery to my pulmonary valve.   I’m also mum to Ryan Andrew who died aged 3 days old with Tetrology of Fallot, Pulmonary Atresia and Patent Ductus Arteriousus, and Aaron Paul who is 9 and has a small arterial septal defect.

Helen Riley, North Home Counties Coordinator and Treasurer for CHD-UK
I was born with TOF (Tetralogy of Fallots) and I just had my pulmonary valve replaced in June 2012 at the Royal Brompton Hospital. I had my first operation in February 1975 at Harefield Hospital. I’m also a mother to Olivia who was born healthy heart.

Rachel Clynch, North Coordinator and Trustee for CHD-UK

We have vacancies for the following positions:

Wales Coordinator for CHD-UK
vacant, if you are interested in this position, please apply by emailing CHD-UK

South West, Coordinator for CHD-UK
vacant, if you interested in this position, please apply by emailing CHD-UK

South Coordinator for CHD-UK
vacant, if you are interested in this position, please apply by emailing CHD-UK

South East Coordinator for CHD-UK
vacant, if you are interested in this position, please apply by emailing CHD-UK

North West Coordinator 
vacant, if you are interested in this position, please apply by emailing CHD-UK

We are here to give hope, just like Mark O’Shea who is an Australian legend. He has done a video giving hope to families around the world showing kids that nothing, not even open heart surgery as an infant, can stand in the way of living life to the fullest! As one friend put it “WOW, it’s so nice and comforting to see other CHD’ers all grown up and thriving…check it out!”  (so here it is,  we hope you enjoy it).

CHD-UK’s history

CHD-UK was started in May 2007 by a lady called Haze who set up a group on Facebook and a page on MySpace where we were writing blogs about the different types of CHD’s and other necessary information, such as, Endocarditis, What type of Tests does a CHD’er have? Thus, it was built up from there.  This website is now the main page for CHD-UK.

Members testimonials

We received this from a mum (Rana Manzi (Orange County, CA)) in relation to the Article published on the Newcastle Chronicle website:

I hope you realize what a truely amazing inspiration you are to heart mums. To see you 37 and thriving gives us all hope that no surgeon or doctor can even begin to give us! THANK YOU!

Here are a few members testimonials that we have received in regard to CHD-UK website.

I think story sharing helps us CHD parents validate our feelings and gives us the opportunity to feel normal. No one understands what it’s like to have a sick child or to be a CHD survivor unless you’ve been there yourself. Keep up the great work! Ruth Estwick: 24th April 2010

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Hello, I am Amanda Carr, mam to Tegan age 5, non CHD and Emerald, age 17
month with a repaired Coarctation of the Aorta.   How I wish I had found
your site sooner.  It is amazing, no nonsense and straight forward.  Whilst I
feel the medical team are amazing, we are under Newcastle Freeman, I feel I
have learnt more today than in the past 17 month of learning about her
condition.  Many many thanks,  Amanda Carr.

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It is so great to know that there is someone out there that has taken life so long with CHD.  I am 26 years old and had a Mustard procedure when I was 6 months old. I hope I can join your friend and learn more from you about life with CHD.  Sumari Van Dyk.

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Thank you for all your hard work and effort with this website, it really is a kind work.  Tabea Bruce

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Thanks babes its beautiful. (In regard to the CHD Angels page) Julie Chambers

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I’m so happy to have got in contact with you and praise the work you do and support you give,you are truely special….xxxxxx  Jemma Kirkhan

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I am a British guy living in NZ. Born in 70 with TGA. I have just become friends of Stuart Watson, he told me about your group. Good work!  Victor Wiggins

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All I want to say is that lots of people think you are doing great and you help many and that’s what counts Alexandra Mouhsine

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