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    tapvr

    Explore "tapvr" with insightful episodes like "Accepting your CHD and Thriving", "Raising Awareness of Heterotaxy Syndrome", "When a Baby Needs a Heart Transplant", "Encore Presentation of "A Twin Miracle"" and "Encore Presentation of "You Are Not Alone"" from podcasts like ""Heart to Heart with Anna", "Heart to Heart with Anna", "Heart to Heart with Anna", "Heart to Heart with Anna" and "Heart to Heart with Anna"" and more!

    Episodes (6)

    Accepting your CHD and Thriving

    Accepting your CHD and Thriving

    What is Double Outlet Right Ventricle?  What is TAPVR? How did living with congenital heart defects influence Michael McKelvey’s life growing up? What has Michael achieved in adulthood?

    Michael McKelvey is 30 years old and lives with a complex congenital heart defect (CHD) called double outlet right ventricle, or DORV. He works as an internet service provider technician in Pittsburgh. Growing up, life wasn't easy for Michael. He underwent four open-heart surgeries between the ages of 9 days and 16 years and was a small, skinny, sickly kid who was always told what he couldn't do. As he grew older and began to understand his CHD, he struggled to accept his condition. Over time, this changed and he began to embrace what he could do. Today, Michael is married and lives a very active lifestyle even though he will face more surgeries in the future. He is talking to us today in the hopes that his outlook can help others.

    Links to helpful sites and to materials mentioned in the show:

    TAPVR: https://www.mayoclinic.org/diseases-conditions/total-anomalous-pulmonary-venous-return/cdc-20385613#dialogId36635208

    DORV: https://kidshealth.org/en/parents/dorv.html#:~:text=Double%20outlet%20right%20ventricle%20(DORV)%20is%20a%20heart%20defect%20where,it%20is%20born%20with%20it.

    Pulmonary artery banding: https://emedicine.medscape.com/article/905353-overview

    Michael’s YouTube channel:  https://www.youtube.com/watch?v=3NPGuIh9LmA

    Michael’s poem: https://shareyourheart.live/poem-michael?fbclid=IwAR2T8vC4Fxikw0C6aiBom0MR6goKJCS2m5rEFzccX82LwTSc0VzKXnOjQNw

    Tom Dahlborg's page: https://www.theheartcommunitycollection.com/thomas-dahlborg

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    Raising Awareness of Heterotaxy Syndrome

    Raising Awareness of Heterotaxy Syndrome

    Heterotaxy Syndrome is a rare congenital disorder which usually includes a complex congenital heart defect. In this episode of "Heart to Heart with Anna," Faith Earnest, a heterotaxy syndrome survivor, shares with Anna what she has uncovered with her research, what her life has been like growing up with this rare congenital syndrome, and what she believes others with heterotaxy syndrome need to know.

    Other Heart to Heart with Anna Episodes involving heterotaxy syndrome:

    Ivemark Syndrome: Yesterday and Today

    Raising Awareness of Ivemark Syndrome

    Homeschooling a Special Needs Heart Warrior

    A Connection Between Flu, Arthritis & Heart Disease: A Mother's Instincts

    Facebook Heterotaxy Support Groups:

    Heterotaxy Connection Support

    The Heterotaxy Network


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    Anna's Buzzsprout Affiliate Link

    Baby Blue Sound Collective

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    When a Baby Needs a Heart Transplant

    When a Baby Needs a Heart Transplant
    Returning Guest, Dana Henning, shares with Anna what it was like for her family to find out in utero that her baby would be born with hypoplastic left heart syndrome and how they were prepared for their son to need surgical intervention but how they were in for a greater shock after he was born. Dana reveals the unusual conditions regarding her son's physiology that forced the family to accept that the only hope for their son to lead a normal life was a heart transplant -- and he couldn't wait. In this episode, Dana shares with Anna what it was like for her family to wait in the hospital until after her infant son actually received the gift of life -- a heart transplant -- within the first months of life.Support the show

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    Encore Presentation of "A Twin Miracle"

    Encore Presentation of "A Twin Miracle"
    How does a "natural" mother who wanted a home birth deal with the disappointment of being told she would have to deliver in a hospital? How does that same mother feel after her son is diagnosed with a potential life-threatening birth defect?Support the show

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    Encore Presentation of "You Are Not Alone"

    Encore Presentation of "You Are Not Alone"
    What is the number one birth defect? How have grandparents, survivors and parents felt about being part of the congenital heart defect community? Tune in to hear the answer to these questions and more!Support the show

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    A Twin Miracle!

    A Twin Miracle!
    Having twins seems like a miracle all by itself, but our Guest, Kathy Kolodzinski has a remarkable story to share. Listen to her as she shares the miracle of birth, how her son's undiagnosed congenital heart defect could have taken his life shortly after birth and how one decision, different than she made with the birth of her other children, just might have contributed to the miracle in her son's life. To read about the story of Kathy's birth experience, check out her blog: http://lovinlifewithkids.blogspot.com/2014/10/the-twins-birth-story-part-1.htmlSupport the show

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