Why was Alongside Network started?
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Transcript:
When my youngest son was 7 months old, he had a major surgery that saved his life, which was amazing, and also after an extended period in the hospital and a long intubation. He came home as a really different kid than we had brought to the hospital. He essentially scream cried for 9 months straight, and we kept bringing him back to the surgeon and the pediatrician and the emergency department in the middle of the night, and everyone kept telling us, "He looks great, he's doing great”. And physically, that was true, but there was this whole other aspect that was happening. Eventually, our pediatrician said, “You know, I wonder if this is PTSD,” and she was right. She also hadn't had the training to know what to do with the family presenting in her office with that question. So it took us many more years before we could find the right resources to support him and our family through what had happened. In the meantime, I really started to dig around to try to understand what had happened, and what does this look like for other families? Is this a larger systemic issue? Did we fall through the cracks? And what does it look like for folks who don't have the privileges that our family has? We're a white family navigating the system in our first language, happy to go toe-to-toe with doctors, and yet the system wasn't working for us. I came to find that there are over 20 years of research around this problem, it is called pediatric medical traumatic stress. And we know that up to 80% of families who have a child with a life-threatening illness or injury have some level of measurable traumatic stress following that experience. If this experience resonates with you, I hope you'll choose to follow Alongside Network and learn about the work that we're doing to support families and caregivers. And to support practitioners so that we can increase the level of education around this topic and ensure that families have psychosocial supports throughout their experience, including post-discharge. We really welcome you to join the Alongside Network.