Blog
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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…
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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…
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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
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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…
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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…
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“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…
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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…
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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,…
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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…
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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…