140: Alyssa’s Story | A Mistaken Brain Surgery, Rebuilding Trust in The Medical System, + A Life-Limiting Prognosis

There’s this moment in every parent of a rare or medically complex kid’s life, where you suddenly realize that the medical team you’re working with doesn’t know everything and might not know how to make the best medical decision for your child. It’s terrifying... but it also feels a little bit like a rite of passage by now, and you can only hope that the way you find this out isn’t through pain and trauma for your child.  In Alyssa’s case, her daughter and her family weren’t so lucky. In this episode, Alyssa Nutile, mom (and also producer for this podcast!), shares the traumatic story of Gemma’s first few weeks of life, from a misdiagnosis, multiple unnecessary brain surgeries, and a lot of doctor conflict. This lost time and unneeded pain cuts especially deep, considering her daughter has a life-limiting prognosis.  Alyssa also shares how, despite everything, she’s found a way to work with her daughter’s medical team, albeit much more cautiously. And, at the end, she tells her side of the story for how she started working for Madeline and The Rare Life!   Finally, a big thanks to our sponsor for this episode, Functional Formularies!  Links:  Visit the Functional Formularies website for more tube-fed formula options!  Listen to Ep 19: The Story of Claire for another perspective on life-limiting diagnoses.  Listen to Ep 125: Traveling with Disabled Kids w/Alyssa Nutile.  Listen to Alyssa’s podcast Caffeinated Caregivers.   Follow Alyssa on Instagram @caffeinated_caregivers!  Follow us on Instagram @the_rare_life!  Donate to the podcast or Contact me about sponsoring an episode.  Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!  Access the transcript on the website here.   And if you love this podcast, please leave us a rating or review in your favorite podcast app!