Congenital Heart Disease Awareness Week: Understanding, Educating, and Supporting

By Gui Rego, Lead ACHD Clinical Scientist, Bristol Heart Institute

What Is Congenital Heart Disease (CHD)?

Congenital Heart Disease (CHD) refers to a group of heart defects that are present at birth. These defects can involve problems with the heart’s structure, such as holes in the heart, valve issues, or blood vessel abnormalities. In the UK, approximately 1 in 100 babies is born with some form of CHD, making it the most common congenital condition affecting newborns.

While these conditions can range from mild to severe, significant progress in medical treatment and care means that many individuals with CHD now live longer, healthier lives. However, this progress is due to the dedication of healthcare professionals and the importance of early diagnosis and intervention - and there is still work to be done.

Congenital Heart Disease Awareness Week (7th - 14th February 2025) provides a crucial opportunity for everyone to come together to raise awareness, highlight the importance of education, and support individuals living with CHD.

Why Is CHD Awareness Week Important?

CHD Awareness Week is a dedicated time to shine a spotlight on congenital heart disease, bringing much-needed attention to both the challenges and the triumphs of individuals affected by CHD. For healthcare professionals, it is a reminder to reflect on the importance of early diagnosis, ongoing care, and advancements in treatment that have improved the lives of many patients. For the public, it’s an opportunity to learn more about CHD and how we all can make a difference.

Raising awareness about CHD helps ensure that early diagnosis remains a priority and that there are robust support networks for patients and families. Although many people may not fully understand the impact of CHD until it directly affects them, educating both the public and healthcare professionals can increase the likelihood of timely interventions and better care for those affected.

How Can We Support CHD Awareness Week?

1. Learn About CHD

Taking the time to learn about what CHD is, its causes, and how it affects individuals throughout their lives can make a huge difference. Whether you are a healthcare professional or a member of the general public, understanding the complexities of CHD enables better support and care for those living with the condition.

For healthcare professionals, this week is an excellent opportunity to stay up-to-date on advances in diagnosis, treatment, and long-term management strategies for CHD. The South Wales and South West CHD Network plays a significant role in providing educational resources and training opportunities for healthcare professionals to ensure that we are always equipped to deliver the best care to our patients.

2. Support CHD Families

CHD doesn’t only affect those with the condition but also their families. Parents, caregivers, and loved ones often find themselves overwhelmed by the challenges that come with the diagnosis, treatment, and long-term care needs. Whether it is offering emotional support, providing resources, or simply showing empathy, we can all contribute to supporting these families through their journey.

Healthcare professionals can assist by ensuring that reliable resources are available for families and by guiding them through what is often an emotionally taxing experience. The South Wales and South West CHD Network offers various support resources for these families, and sharing these resources can make a meaningful difference in their lives.

3. Share Stories of Resilience

One powerful way to support CHD Awareness Week is by sharing the stories of resilience from individuals with CHD, their families, and their healthcare teams. These stories provide hope, help others feel less isolated, and highlight the strength it takes to face the challenges associated with CHD.

These stories remind us that while CHD may present unique challenges, there are also many stories of success, perseverance, and support. They serve as testaments to the care, research, and efforts that continue to improve the lives of those living with CHD.  Patient Stories

4. Participate in Events and Campaigns

Throughout CHD Awareness Week, there are various events and campaigns that offer ways to get involved. These may include fundraising activities, educational webinars, and awareness-raising campaigns. Getting involved in these events is a great way to contribute to the CHD community and help raise awareness about this important issue.

The South Wales and South West CHD Network also offers regular educational sessions and webinars, providing healthcare professionals with the tools they need to further enhance their knowledge and stay connected with other care providers. Participating in these events is a valuable opportunity for both professionals and the public to learn and engage with the latest developments in CHD care.

The Importance of Education in CHD Care

Education is at the heart of improving CHD care. Whether it is ongoing training for healthcare professionals or awareness programs for the general public, education plays a crucial role in ensuring that people with CHD receive the best possible care.

For healthcare professionals, continuous learning about the latest research, imaging techniques, and treatment protocols can significantly impact patient outcomes. For the wider public, increased understanding of CHD’s effects can help strengthen community support and provide individuals with CHD and their families the knowledge and resources they need to thrive.

Looking Ahead: What’s Next for CHD Care?

The progress made in CHD care in recent years has been incredible, but as with any medical field, there is always more work to be done. CHD Awareness Week serves as an opportunity to reflect on the progress we have made and look forward to the future of CHD care.

By continuing to raise awareness, share knowledge, and support those affected, we can create a world where every individual born with CHD has access to the best care and the chance to live a full and healthy life.

As a healthcare professional, advocate, or community member, we encourage you to join in raising awareness this week. Whether you are learning more about CHD, supporting a family, or simply sharing information, every effort makes a difference.

Get Involved with the South Wales and South West CHD Network

If you are a healthcare professional looking to expand your knowledge on congenital heart disease or are interested in supporting the South Wales and South West CHD Network, there are a variety of resources, training opportunities, and ways to get involved. Explore the website here or follow the Network on social media for the latest updates and ways you can help make a positive impact.

By focusing on both public education and professional development, we can create a stronger, more supportive community for those impacted by congenital heart disease.

Let’s make this CHD Awareness Week a step forward in raising awareness, improving care, and supporting families affected by CHD.