Patches

Patches Supporting children and families affected by Congenital/aquired Heart conditions & genetic conditions throughout their journey . Based in Nottinghamshire

We are a support group for families of children with heart conditions in the community. We aim to support all families including those whos children have complex needs due to genetic conditions / syndromes ,which may mean a vast aray of other health ,physical, speech & developmental
problems whatever their childs diagnosis . We offer friendly parent to parent support , information and signposting

. We have strong links with many professionals to ensure you get the support you need . We also loan breathing monitors to our families as well as oxygen saturation monitors if instructed or recommended by the childs team . We also help low income families with hospital costs (subject to criteria )


Our aim is to ensure all CHD families have access to community support from diagnosis through to adulthood x

Established in 2011

You can find out more by visiting our website

http://www.patchesheartgroup.org


We are also passionate about raising awareness of Congenital Heart Defects and will do our upmost to educate the general public on this and all areas associated with it x

21/06/2026

Happy fathers day to all the incredible heart dads out there ❤️
Trying to navigate life in a very different way , we see you 🥰

13/06/2026

We have had an amazing raffle prize donated 🥰
Watch this space to find out more 👍❤️

The petition calling for cardiac screening at age 14 was created by Gill and Stephen Ayling in memory of their son Natha...
10/06/2026

The petition calling for cardiac screening at age 14 was created by Gill and Stephen Ayling in memory of their son Nathan Bryan. Their advocacy honours Nathan’s memory and all those lost to a and could save countless young lives.
Will you add your signature?
Every name counts.


https://www.facebook.com/share/1CXjm4yaey/

Fund population cardiac screening for every young person when they reach age 14 years. The screening should be undertaken with a review of family history and electrocardiogram (ECG) followed up where necessary with echocardiogram (heart scan).

https://www.facebook.com/share/p/1E4rJr2vGC/
05/06/2026

https://www.facebook.com/share/p/1E4rJr2vGC/

They told you your child needs a heart cath.
And your stomach dropped.
Because you heard the word "heart" and your brain went straight to the worst place it could go.
Take a breath. Let us explain this.
A heart catheterization is not open heart surgery. They do not open the chest. They do not stop the heart. They thread a thin tube through a blood vessel — usually in the leg, neck, or arm — and guide it all the way to the heart using X-ray imaging.
Your child is asleep. Your child is not in pain.
And what happens inside that cath lab can change everything.
Doctors can see pressures inside the heart and lungs. They can check oxygen levels. They can look at blood flow. They can get detailed pictures of structures that no outside scan can fully show.
But it doesn't stop at diagnosing.
They can open narrowed valves. Place stents. Close holes. Create or enlarge openings between chambers when the heart needs a different path to survive.
All of it. Through a blood vessel.
No open chest.
No cracked sternum.
A completely different path to the same goal.
And for CHD kids — this isn't always a one-time thing.
Many heart children have multiple caths throughout their entire childhood. Because their heart changes as they grow. Because caths can delay surgery. Replace surgery. Plan surgery. Monitor what's shifting before it becomes a crisis.
It is a powerful tool.
It is not something to fear.
It is doctors fighting for your child in one of the most precise ways medicine can offer.
Your child is brave.
Your child is strong.
And now you know exactly what's happening in that room.
💙 Save this. Share it with every heart family who needs to understand what a cath actually is.

Follow Invisible Warriors — we share the moments nobody else talks about. So no heart family ever feels invisible or alone. 💙

https://www.facebook.com/share/1E4M1u32Sv/
01/04/2026

https://www.facebook.com/share/1E4M1u32Sv/

Congenital heart disease: Changes to Disability Living Allowance for children from 1 February 2017

If you received a Disability Living Allowance (DLA) decision for your child between February 2017 and October 2020 and your child has congenital heart disease, you could be entitled to a review.

Read the full details here:
https://bit.ly/4v8QAVR

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Nottingham

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