James Robinson's Emotional Odyssey: Love and Loss in a Heart Family

·44 min·4 clips

James and his wife discovered they share the same rare genetic mutation, making them distant cousins.

Anna Jaworski, host of Heart to Heart with Anna and an adult with a congenital heart defect, welcomes James Robinson. James is married to Tali and father to three sons, including Nadav, who passed away at age five from complications of a single ventricle heterotaxy heart defect. James wrote the book 'More Than We Expected' after his New York Times article about a post-loss family road trip garnered significant response. He explains Nadav's diagnosis in utero, involving heterotaxy and primary ciliary dyskinesia, which affects organ placement. James details the three palliative heart surgeries Nadav underwent, aiming for a future transplant. He reveals a surprising genetic discovery: he and his wife share the same rare mutation in the H5 gene, indicating a common ancestor. The family prioritized normalcy, taking trips like one to Australia that led to an emergency 14-hour surgery for a clot. James describes living in hospitals for months, emphasizing the importance of maintaining humanity, such as taking Nadav outside against rules. He shares anecdotes of Nadav's wisdom, like correcting a doctor's terminology. James discusses grief's isolating nature and his reconnection to the CHD community through writing. Anna highlights the book's role in advocacy and encourages listeners to support CHD awareness. The episode concludes with James sharing a memory of Nadav dancing at a baseball game.

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