1. The Top Ten Things Every ACHD Patient Should Know


    from ACHA / Added

    538 Plays / / 0 Comments

    ACHA President/CEO Amy Verstappen presents the top ten tips she sees as essential for every Congenital Heart Defect (CHD) survivor. Based both on her ACHA leadership experience and her own personal journey negotiating her complex CHD, it will cover topics ranging from how to find quality care, incidence data and tips on how to explain what you have.

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    • Exercise and Congenital Heart Disease


      from Jodi Lemacks / Added

      50 Plays / / 0 Comments

      Dr. Nicolas Madsen talks to CHD parents, patients and families about exercise for the CHD patient.

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      • Cardiac Catheterization Opening the Black Box


        from Jodi Lemacks / Added

        99 Plays / / 0 Comments

        In this webinar, Dr. James Kuo of Cook Children's will talk about cardiac catheterization. Many children with congenital heart disease will need a cardiac catheterization at some point in their lives, and this can be scary for kids and their families. Dr. Kuo will explain what cardiac catheterization is, why it is done, how it is done, and what else can be done during a catheterization. We hope this information will make parents and caregivers feel more empowered when making choices in caring for their children.

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        • Paul Cardall Lecture: Before My Heart Stops


          from Paul Cardall / Added

          319 Plays / / 0 Comments

          Paul Cardall shares his story at the 2010 Primary Children Medical Center's annual Festival of Trees kick off. The Festival is organized by a volunteer board of 85 women who enlist time and talents from thousands of individuals, organizations, businesses, and families throughout Utah. Over $29.3 million has been raised for children at Primary Children’s Medical Center through the Festival since 1971, with $1,502,080.52 raised in 2010.

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          • CHD 101 A Congenital Heart Defect Primer


            from Jodi Lemacks / Added

            1,222 Plays / / 0 Comments

            Learn about some of the major structural heart defects and how they occur. This is an overview and can help you understand these defects so you can give support to others and have a better understanding of CHDs in general.

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            • evan 1st birthday video 1


              from Czarina Hounsel / Added

              356 Plays / / 0 Comments

              Evan's first year - a boy born with one of the rarest syndromes out there - my 1 in a Million son's brave year battling through 2 heart surgeries (one open heart surgery) and cleft lip and palate surgery. *Music: "Beneath my Feet." - Mumford and Son's, "Need you Now" - Plum, "This is Grace" - Matt Hammit, "Amazing" - Janelle, "You've Got a Friend in Me" - Randy Newman, "The Fighter" - Gym Class Heroes

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              • TGA- Peytons Story


                from Amanda Eyler / Added

                381 Plays / / 0 Comments

                The video I made about my son Peytons story with TGA.

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                • Caden's Story


                  from Dawn Silverman / Added

                  168 Plays / / 0 Comments

                  5 years ago today, Evan and I anxiously sat in the Miami Children’s Hospital CICU waiting room as we trusted Caden’s heart in the miraculous hands of Dr. Redmond Burke. We are still so grateful to Dr. Jason Katz who selflessly came in on his day off, so he could bring us frequent updates from the operating room. We are also thankful to all of you who have continued to support us since the beginning of Caden’s fight for life and to all the new friends who have come into our lives since. After much deliberation, I decided to create a slideshow to finally fully share Caden’s journey with all of you. It contains several pictures that Evan and I have never shared with anybody (not even family). Many of you know Caden as a vivacious and charismatic little boy – but he has had to fight to be where he is today. Though we have never allowed his heart defect to define who he is, the truth of the matter is that his CHD will never be cured, and he will always only have half a heart. It is my hope that by sharing his journey, you will be able to appreciate how far he truly has come. I also hope that his story may inspire other heart moms who may be feeling that their “light at the end of the tunnel” may never come. When I showed Caden this slide show, he became overwhelmed with emotion and started to cry – a happy cry, a cry full of gratitude. You see, even though he is only 5, he has developed such an appreciation for just being alive. He lives life fully and experiences each day completely… leaving nothing for granted. Watching him has taught me the true value of life, and I, too, now try to find the wonder in everyday experiences. The slide show is about 10 minutes long (though it took me many days to put together). I hope you can find some time in your day to bear witness to his journey. He still has a long road ahead of him, but he is a fighter, a warrior. He is living proof that miracles do happen. I am so proud that he was chosen to bless our lives and to watch how he brings so much joy to the lives of others.

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                  • Mikaal Yousaf


                    from Every Life Has A Story / Added

                    102 Plays / / 0 Comments

                    Marta & Khurram lost their 4 1/2 month old son, Mikaal to a congenital heart defect on 2/12/10. This video was made @ everylifehasastory-home.blogspot.com

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