“Hello Podcasters! Let's help one another create amazing content!”
My name is Natural. In 2012, pregnant with my first child, I went in at 22 weeks for my gender determination ultrasound, only to learn that my son’s liver was in his chest cavity. What did this mean? He was suffering from a condition called Congenital Diaphragmatic Hernia. This is a medical anomaly where the diaphragm does not fully develop, allowing the lower organs to move into the chest cavity, and prohibiting lung growth and heart development. While CDH presents with only a 50% chance of survival, his was a severe case, and as my pregnancy continued, his prognosis grew worse. By the time he was born, all of his lower organs were up, and he was given a 10% chance of survival. Having already chosen his name, I realized that we had one choice before us; to Fight for Legacy.
Upon learning of his diagnosis, and never having heard of it, the medical team gave us mounds of information which was very difficult to navigate. What they could not offer were coping resources...we had to learn those on our own.
Our family made several resolutions to fight for Legacy’s survival, including relocating and enduring over 26 surgeries, medical procedures and interventions. After 10 months and many ups and down, Legacy was able to come home to a virtual hospital room; with 24/7 nursing, a tracheotomy, a feeding tube, oxygen support, lots of medication, and more surgeries and procedures to come. Ultimately, I am so glad we did, because after fighting for Legacy, a 10% chance of survival has resulted in him just celebrating his 10th birthday!
Ultimately, our experience as a family has created in me a passion to offer coping support to other families struggling with the same challenges, offering the very coping skills that no one was able to offer us, particularly over those first few years. I would like to help families figure out what we had to figure out on our own; how to cope with it all!
Based on our experience, I have recently transitioned to being a coping coach for families whose children find themselves in similar circumstances, including but not limited to, long hospital stays, multiple surgeries, relocation, difficulty maintaining healthy relationships with their network of support, even the unfortunate event of the passing of their child.
I am hoping to encounter great podcasts that desire polished content about rare diseases, Congenital Diaphragmatic Hernia, medically needing children, the balancing act of care, including working family dynamics in the midst of it all!
Please feel free to reach out with any questions or to book!
Best regards,
Natural
