Blog
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Teen Topics – Advocating for Yourself
Annaleci was taught at a young age how to speak up for herself. She found, as she grew up, just how important that is , especially when it comes to her healthcare and advocating for her needs.This week, Anna shares her story with us. My life growing up, from an outsider’s point was hectic,…
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Teen Topics – Preparing Your Child for Independence
Last week, we heard from Abby Hack on heading off to college. This week, we will hear from her mom, Janice. Watching your child leave home for the first time can be worrisome, especially with cardiac issues to consider. Janice shares with us how she has helped prepare Abby to take greater ownership of her…
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Teen Topics – Going Off to College
Going off to college is a major milestone in a young adult’s life. For many, it is the first time living away from home, from their parents, and from everything familiar to them. A chronic illness can complicate the transition. In this week’s blog, Abby Hack shares what it was like for her to gain…
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Teen Topics – Medical I.D.’s and Taking Ownership of Your Care
CCHD begins its Teen Topics Series for the month of October. In this week’s post, American Medical IDs, introduces I.D.’s as one step toward families helping their teens take ownership of their own care. Read further on the importance of involving teens in self -care and for a special offer . How Medical IDs Can…
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Redefining Of Course
Christina shares her experience as a patient with us, highlighting the important role talking about mental health plays in destroying the stigma. In some recent downtime on a day off, I had settled in to read a book written by Hanya Yanagihara, and there is a moment in that book that sticks with me. In…
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Water In May
CCHD’s Jennifer Weiner had the great opportunity to receive an advanced copy of Water in May, a Young Adult novel by former Pediatric Cardiologist Ismée Williams. Read on as Jennifer shares her thoughts on the story. Despite being the number one birth defect, CHD is little known in mainstream society (we’ll get there!),…
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Facing Reality: Catherine’s Story
Lots of prayer, purpose and passion has prepared me for a whole (hole) new way of life! I kept asking myself, “What is holding me back from living a life I would love?” I was always struggling and complaining that my lack of energy and stamina was really in the way of me pursuing my…
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Q&A with A Mental Health Expert
CCHD: Thank you for taking the time to share with CCHD about mental health and congenital heart disease. As a psychotherapist and someone with personal experience in the CHD community, we are interested in your perspective on the kinds of issues that patients and families deal with. As you know, we recently had two blog contributions—one…
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School Intervention Series: Advocating for a Program
In her final post of a three-part series, Kyle Herma, School Intervention Specialist at Children’s Hospital of Wisconsin, details how to start advocating for a dedicated school liaison at your cardiac center. If you missed the series, you can find her first post here and Complete Resource Guide here. Advocating for equal accesses to quality education for children with complex…
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Aron Matthew Northcraft
Aron’s mother Sara has been an active member of the CHD community, helping to educate people on how to support families after losing a child and advocating at the Legislative Conference in years past. Here she shares his story. Aron Matthew Northcraft was born January 10, 2007 with Hypoplastic Left Heart Syndrome (HLHS). He was…
