Blog

  1. Congenital Heart Futures Act of 2017 (S.477/H.R.1222)

    Revised Bill Language: H.R.1222 – Congenital Heart Futures Reauthorization Act of 2017, Engrossed Amendment Senate (12/12/2018)   UPDATE, December 21, 2018: The Congenital Heart Futures Reauthorization Act was signed into law.  We can all celebrate that a federal law was passed that will help shape the future for the CHD Community, across the lifespan, through robust funding…

  2. Mother’s Day Q&A

    In this week’s blog, amazing heart moms, warriors, and 2 junior advocates talk motherhood and what they love most about their moms in this mother’s day Q&A.

  3. The Unexpected Defibrillator

    Growing up with CHD and constantly facing your own mortality is a very scary reality. For many warriors, anxiety can arise from the myriad of worries. Today we’ll hear from Danielle Sikorski, a heart warrior who shares her personal experience and how she tries to mitigate some of the stresses her daily life. Please note that…

  4. Action Alert: Tell your Senator to Sign-On

    In December 2018, the Congenital Heart Futures Reauthorization Act became law.  The law authorizes, or allows for, $10 million in research, data collection, and awareness activities at the CDC over the next 5 years.  This is 2.5 times the current funding of $4 million. Therefore we need to strongly advocate for full funding of the $10…

  5. Head and Heart with Dr. Creel

    For the month of April, we are exploring mental health, and what mental health means for a CHD family.Today we’ll hear from Dr. Creel, a Certified Grief Recovery Specialist, as she shares her experience with CHD families.   Fifteen years ago, when I first began my work in the field of working with heart patients, both…

  6. Grace

    Grace was born on March 7, 2017. At birth, to her parents heartbreak, she was diagnosed with complete atrioventricular canal defect (AVSD), as well as trisomy 21. She had open heart surgery on August 7, 2017 at just 5 months old. The first year of her life was hard on her family, especially the first…

  7. March Recap – Taboo Topics

    Hi PCHA-ers! Here’s a little recap on our “taboo” series this past month.  Taking Back Some Control CHD and the Taboo Q&A: Your Questions Answered “Taboo” ACHD Activities Teen Topics – The Top 10 Things to Remember

  8. Teen Topics – The Top 10 Things to Remember

    It often seems that the “taboo topics” in life aren’t really all that relevant until your teen years. As the seasons change, new milestones come and go.  This can be an especially trying time in the life of an adolescent with congenital heart disease, especially as they are undergoing the major transition of leaving the nest…

  9. Taosies Carpenter

    Taosies was born in January 2010 with Critical Congenital Heart Disease. His anatomical diagnosis is Double Inlet Left Ventricle (DILV) with Transposition of the Great Arteries (TGA), also known as single ventricle anatomy or “half a heart.” There is no repair available for his anatomy, only palliative surgeries to make the most of what his…

  10. “Taboo” ACHD Activities

    **Disclaimer: ADULT CONTENT** Today’s post is on a subject that people with CHD don’t always discuss, but it is a very important topic nonetheless: sex. Below is one woman’s account of what it’s like to be with her husband and have CHD. Due to the sensitive nature of this topic our blogger has asked to…

  11. Action Alert: Tell your Representative to Sign-On

    In December 2018, the Congenital Heart Futures Reauthorization Act became law.  The law authorizes, or allows for, $10 million in research, data collection, and awareness activities at the CDC over the next 5 years.  This is 2.5 times the current funding of $4 million. Therefore we need to strongly advocate for full funding of the $10…