1. 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…

  2. 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…

  3. “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…

  4. 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…

  5. CHD and the Taboo Q&A: Your Questions Answered

      Today we revisit a couple of Q&A videos that were originally posted in October of 2017. The first video is an interview with Dr. Madsen, on alcohol and drugs. And the second video is an interview with Dr. Gurvitz on college, tattoos, and contraception.  Dr. Nicolas Madsen – Activity, Drugs & Alcohol, Related Conditions,…

  6. Taking Back Some Control

    For the month of March we will be discussing the various “taboo” subjects that come up in thinking about life with CHD. This week we will hear from Jennifer, a CHD warrior, who talks about how she took back some control by choosing some of her scars. I was trying on dresses for my best…

  7. Holden Joseph Flynn

    It was at out 20 week ultrasound that we learned of Holden’s Congenital Heart Defect. We were naïve to parenthood and CHDs, but educated ourselves as much as we could to prepare for his arrival. Holden Joseph Flynn came out swinging on October 11, 2011, diagnosed with Unbalanced Complete Atrioventricular Canal, a complex single chamber…

  8. Carter Fidel Williams

    “When we first learned of our son’s congenital heart defect, we wanted to ensure that we were equipped to face this challenge. We are very grateful for PCHA, the information and support we received was invaluable as it properly prepared us for this journey.” – Shuntae Williams

  9. Trinity Higgins

    Trinity Higgins

    “PCHA means that I have someone fighting to make sure I have access to information that I can understand and for legislation that impacts my future health.” – Trinity

  10. Joshua Morgan

    Joshua was born, at 36 weeks and 4 days, on November 25, 2017, at 7:55pm. He was delivered early due to his dropping heart rate during my routine check ups.  Once Joshua was here, he was 3 pounds and 6.1 oz, and went straight to the Edward NICU. While he was there, it was discovered that he…