HLHS Cause to Cure

Hypoplastic Left Heart Syndrome Program from Mayo Clinic

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Feb 7, 2015 · Leave a Reply

Congenital Heart Defect Awareness Week: February 7-14

By Suzanne Ferguson @suzannerferguson

As part of American Heart Month, an occasion to pay special attention to keeping your heart healthy, Congenital Heart Defect (CHD) Awareness Week is February 7-14, 2015. CHD Awareness Week is a special week dedicated to raising awareness and support for children born with heart defects. It’s also a special time to celebrate our little heart inspirations. Here at the Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome, we will be tweeting every day to help spread awareness and to keep the CHD conversation flowing. Make sure you follow us @MayoClinicHLHS.

What are CHDs? HLHS-heart-not-labelled3

CHDs, or problems of the heart structure, are the most common birth defect. Each year, approximately 40,000 children are born with CHDs and almost 960 of those are born with hypoplastic left heart syndrome (HLHS). Some CHDs do not require treatment, while others may require surgery to ensure the heart is working properly. Most causes of CHDs are currently unknown; so prevention may not be an option.

Spreading Awareness

Getting the message out about CHDs is important to improve diagnosis and treatment options as well as build the CHD community and support systems.

Jason and Susan Smith, guest speakers at our 2014 Feel the Beat event, have been working hard to spread awareness of CHDs after their daughter, Emerson Rose, passed away from HLHS. They even brought the issue to the State House in their home state of South Carolina where the Emerson Rose Act was passed, requiring South Carolina newborns to be screened for CHDs before leaving the hospital. The law became effective in September 2013. Are you curious to see whether or not your state screens for CHDs? Here’s a map to find out.

We always love hearing about new ways people are spreading CHD awareness. If you have a story to share, contact us or send us a message on Twitter.

 

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The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of delaying or preventing heart failure for individuals affected by congenital heart defects including HLHS. The specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science, to diagnostic imaging to regenerative therapies.

Tags: CHD, CHD awareness week, HLHS

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