Blog
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Ryan Kirst
February 3, 1999, our heart warrior was born. We were already blessed with a six-year-old daughter and we were excited to add a son to our family. It wasn’t until Ryan was born that we learned he had something seriously wrong with his heart. He was born blue and right away they knew something was…
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News Alert: 3D Printing a Human Heart Valve
Originally posted on October 10th, 2019 by Dr. Francis Collins on NIH Directors Blog “While there’s a long way to go until then, a team of researchers has reached an important milestone in bioprinting collagen and other extracellular matrix proteins that undergird every tissue and organ in the body. The researchers have become so adept at it that…
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New Diagnosis – Pulse Oximetry
It’s Newborn Screening Awareness Month! Previously we shared these two perspectives on the benefits of pulse ox and the effort to make this non-invasive test a standard screening of newborns. Pulse Ox screening has made it possible to detect CHD in many newborns that would have otherwise gone home undiagnosed. These contributions were provided by Dr….
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Bella
In July of 2017, our heart hero, Bella, was born. We didn’t learn about Bella’s congenital heart defect (CHD)–Ventricular Septal Defect, Unroofed Coronary Sinus Atrial Septal Defect, Pulmonary Stenosis, and Hypertrophic Cardiomyopathy–until she was born at 39 weeks and 6 days. Within a few hours of her birth, Bella had difficulty breathing and her oxygen…
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August Recap – Back to School
Back to school is an exciting time of year, but it can also be a very hectic transition from summer. Throughout the month of August we reviewed tips and tricks on how to make the transition as smooth as possible.
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Success in School – Communication is Key!
As the new school year gets rolling again, it’s easy to see how the physical lists for supplies and schedules will help prepare our students for a successful year, but as a heart-parent, what can we do to help our students when CHD and school come together? This year, I am entering my eleventh year…
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Back-to-School Q&A Panel
For our Q&A Back to School Panel this month, we interviewed three people to gain a greater perspective on how CHD affects kids differently during this exciting time of year. Congratulations on the start of a new school year! Please introduce yourself. What grade will you or your child be entering? Frances: My name is…
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#ConqueringCHD Week 2019
Here are a few great ways to join us in celebrating 6 years of Conquering CHD! It’s your week to shine as a CCHD #ConqueringCHD social media ambassador! CCHD celebrates six life-changing years this month! But it’s not about us…. It’s about YOU! Volunteers all over the country serve families with CHD in many different ways….
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School Intervention: A Complete Resource Guide
CCHD welcomes back Kyle Herma, School Intervention Specialist at Children’s Hospital of Wisconsin. Today, we re-share Kyle’s wealth of information on navigating a school’s system without a dedicated school liaison. Her complete resource list is included for easy reference. Going to school, for a child with complex medical condition, can be scary for everyone! Families might worry…
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Edward Bauman Celebrates One Year Post-Op
One year after surgery, Adult CHD patient, Edward Bauman, decided to mark the occasion by creating a video that shares his experience preparing for and immediately following his procedure. Watch to hear about his journey and his tips and tricks that may help on yours! For more from Edward and his follow up video at…