Patches

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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/

Petition: Fund cardiac screening at age 14 years and cardiac awareness programme 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/

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/18UBtSAwGs/

https://www.facebook.com/share/18oBYQ79UQ/

https://betweenthebeats.substack.com/p/when-hearts-and-minds-dont-heal-at-the-same-time?fbclid=IwdGRzaART8mVjbGNrBFPxImV4dG4DYWVtAjExAHNydGMGYXBwX2lkDDM1MDY4NTUzMTcyOAABHshB4aKy53tfodEyLRxuchhGx50ySxIegkBfpX_tdNT3XB37VwMd8-S_m7D5_aem_KyqDW8GSZSy4-ocG7htsTA&triedRedirect=true&sfnsn=scwspmo

When Hearts and Minds Don't Heal At the Same Time. Depression, aggression, and their connection to children with cyanotic CHD

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

https://www.facebook.com/share/p/1GWoLrc2h2/

Are you on the heart transplant pathway?

The UK currently lags behind other high income countries in terms of access to, numbers of, and outcomes from heart and/or lung transplantation.

A number of nationally appointed patient advocates are seeking Ministerial intervention. This includes a letter to the Secretary of State for Health and Social Care.

Catch the coverage online on Tuesday 24th March and tune in at 8pm to the radio documentary on BBC Radio 4 File on 4.

Read the letter to the Secretary of State for Health and Social Care and sign to show your support here: https://bit.ly/4rO5vBO

https://www.facebook.com/share/14WfGTzdBGr/

The NIHR HealthTech Research Centre in Cardiovascular and Respiratory Medicine is inviting families of children with heart conditions to share their stories. If you’re a parent, carer, or family member of a child or young person aged 0–18 with a heart condition, your insight is incredibly valuable and can help improve support, information, and care for families across the UK.

📝 What’s involved?
A short, confidential survey that takes just 5–10 minutes.
Every voice helps make a difference. If this doesn’t apply to you, please feel free to pass it on to someone who might want to take part.

📲 Click the link below to get started

https://forms.office.com/Pages/ResponsePage.aspx?id=FM9wg_MWFky4PHJAcWVDVj1dh_Rh8SlCmi541F0Ay6xUOVZGNFU2OFdKUE9HMk5BREU2TzJUVDdSNi4u

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

Most people only talk about the child’s surgery.
But very few talk about what happens to the parents afterward.

When a child undergoes open-heart surgery for congenital heart defects, studies show that 30–50% of parents experience significant trauma symptoms.

Not just stress.

Real trauma symptoms like:
• Reliving moments from the ICU
• Difficulty sleeping long after leaving the hospital
• Panic during medical appointments
• Constant fear something will happen again
• Feeling like you can never fully relax

This is often called medical traumatic stress, and it’s far more common in heart families than people realize.

Parents become the strongest people in the room for their child…
but that strength often hides what they’re carrying inside.

If you’re a heart parent and you’ve felt this way, you’re not alone.

And if you’re part of the CHD community, we need to start talking about this more.

Because supporting children with congenital heart defects also means supporting the families standing beside them.

You rarely hear what happens to the parents after the surgery ends.

Heart parents are expected to be strong for their child… but many carry trauma long after the hospital stay is over.

If this resonates with your journey, you are not alone.

❤️ Share your story in the comments
❤️ Send this post to another heart parent who may need to hear this
❤️ Like & share to help bring awareness to the mental health of heart families

The more we talk about it, the more families feel seen.