Lurie Children’s Single Ventricle Center of Excellence

12/30/2025

We want to hear from you what matters!

❤️ February is Heart Month, and February 7–14 marks Congenital Heart Defect (CHD) Awareness Week—a vital time not just to acknowledge CHD, but to take action.

CHDs are the most common birth defect, yet too many families still face late diagnosis, limited access to specialized care, overwhelming medical costs, and a lifetime of uncertainty. Advocacy matters because survival is no longer the only goal—quality of life, mental health, access to care, and long-term support matter too. Real change happens when awareness turns into advocacy. Every heartbeat deserves a future. ❤️

💗 is just around the corner and we want your ideas for how to promote advocacy, awareness, and education of congenital heart disease across our community. Share your thoughts with us here: https://forms.office.com/r/rXzHm7ck3N

12/30/2025

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12/30/2025

So much love! ❤️🫶❤️

12/30/2025

Dozens of volunteers spent the weekend stuffing stockings with thoughtful and curated gifts for patients at Lurie Children's Hospital.

12/21/2025

This is such a beautiful and resilient Illinois family faced with not only one dianosis of single ventricle Single Ventricle Outcomes NEtwork but two with .

The diagnosis do not define Gracie or anyone faced with chronic health conditions. Every human has incredible potential, vitality, and life.

Please consider paying attention to the why connections are important is valued in rare disease.

Giving back and research matters as evidenced by Nancy's Stockings, Saving tiny Hearts Society, National Down Syndrome Society, American Heart Association, and SPCN-Society of Pediatric Cardiovascular Nurses.

Leading the path are many including nurses and and members explain the why it is important to care but most importantly patients and families with the lived experiences exemplified in thevlast video below. at Lurie Children's Heart Center.

https://www.ahajournals.org/doi/10.1161/JAHA.124.036214

https://pubmed.ncbi.nlm.nih.gov/31332952/

https://www.facebook.com/share/p/1CjNAVLmZ2/

Due to improvements in recognition and management of their multisystem disease, the long‐term survival of infants, children, and adolescents with trisomy 21 and congenital heart disease now matches...

12/19/2025

Help us better support teens navigating chronic illness! Understanding your lived experiences makes us better!

12/19/2025

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12/14/2025

We are ready to receive and share this generous gift! ❤️🫶❤️🎄

Thank you! Nancy's Stockings https://nancysstockings.org/

12/11/2025

It’s Lurie Radiothon Day!!!!! 🥰🤩😍

12/07/2025

Love to see PT, OT, Speech, music therapy, nursing, and parents coming together to support Thrivorship at “Lurie Boarding School”. Our village is strong and our patients are better for it!!