3 Lessons I Learned About Birth, the NICU, and Medical Autonomy Through Rare Disease
Becoming an Expert in Medical Advocacy—Whether You Like It or Not
Let’s get one thing straight: I did not sign up for a crash course in medical advocacy. But when my son was born with gastroschisis, a rare birth defect, and later diagnosed with apraxia, a neurological speech disorder (because apparently, we like to collect rare things in this house), I had no choice. I was thrown into the deep end of the medical world, and let me tell you—there was no lifeguard.
If you’re expecting a baby, navigating the NICU, or just trying to wrap your head around how to advocate for your child in a medical setting, welcome. Grab some coffee (or whatever you got), because we’re diving into the raw, unfiltered truth about what it really takes to stand your ground, make informed decisions, and somehow keep your sanity intact.
Lesson 1: Education Isn’t Optional—It’s Survival
When my son was diagnosed with gastroschisis, I had two choices: blindly nod at whatever the doctors told me or learn everything I could about what was happening to his body. Guess which one I picked?
I spent hours researching, reading medical studies (yes, the ones with soul-crushing scientific jargon), and making sense of surgical procedures and long-term outcomes. Why? Because I realized something gut-wrenching—no one was going to hand me all the information I needed. And if I didn’t understand what was happening, how could I possibly make the best decisions for my child?
Key Takeaways:
Understand your rights: Knowing your rights as a parent can empower you to make informed choices during pregnancy and birth.
Be proactive: Don’t wait for someone to give you answers. Seek out information yourself and don’t settle for half-truths or misunderstandings.
Education is your armor: The more you know, the more confident you will be in your decisions, especially when it comes to birth or medical complications.
💡 The more you understand, the more empowered you’ll be.
Lesson 2: You HAVE to Be the Advocate (Even When You’re Exhausted)
Here’s the hard truth: no one will fight for your baby the way you will. Not because healthcare providers don’t care (they do), or because nurses aren’t angels in scrubs (they are). But the system isn’t designed to treat your child like the center of the universe—that’s your job.
The medical world isn’t built for you to sit back and be a passive observer. It’s fast-paced, complex, and at times, overwhelming. You can’t just assume that the doctors and nurses have everything figured out for you—especially when your child’s needs don’t fit into the “standard” mold.
I learned quickly that speaking up isn’t optional—it’s the job description of parenthood. If something didn’t sit right with me, I questioned it. If a doctor dismissed my concerns, I found another one. If insurance was dragging their feet... well, I’d hate to see how many minutes I spent on the phone. If I had to be that mom in the hospital, I embraced the title.
Was it exhausting? Yes. Did I burn out? Absolutely. But did I regret stepping up? Not once.
Key Takeaways:
Speak up: If something doesn’t feel right, it’s your job to ask the tough questions and get clarity.
Set boundaries: Don’t be afraid to say no or ask for more time to think before making decisions.
Be relentless: You don’t have to be aggressive, but you do have to be relentless when it comes to protecting your child.
💡 Be your child’s loudest voice.
Lesson 3: You’re Going to Break Down—And That’s Perfectly Okay
We need to normalize this: you’re going to have moments where you break down. There’s no shame in that. It doesn’t mean you’re weak or that you’ve failed—it means you’re human.
The emotional toll of navigating the NICU, a complicated birth, or dealing with medical challenges is heavy. I spent many nights crying in hospital hallways, overwhelmed by the weight of endless decisions and the uncertainty of it all.
Key Takeaways:
It’s okay to feel overwhelmed: This is a tough journey, and you don’t need to be superhuman.
Don’t carry it alone: Lean on your support system. It’s okay to ask for help.
Take breaks when needed: If you feel like you’re about to break, step away for a moment to breathe. It’s okay to pause and then keep going.
💡 Breaking down doesn’t mean you’ve failed. It means you’re human.
Advocacy is Exhausting, But So Worth It
It’s not just about research, questions, and boundaries; it’s about loving your child fiercely and never letting go of your role as their strongest ally. If you’re going through a medical journey with your child, whether it’s a rare condition, a complicated birth, or an extended NICU stay, you’re going to need all the tools in your toolbox—education, boundaries, and resilience. But remember, no one said you had to do it alone.
Key Takeaways:
Find your community: Surround yourself with other parents who understand and can offer support.
Educate yourself: The more you learn, the more confident and empowered you’ll feel.
Self-care isn’t selfish: Taking care of your well-being is vital in ensuring you can keep fighting for your child.
💡 You’re not alone in this.
If you’re feeling overwhelmed and want some practical tools to advocate for your child, grab my free guide on medical advocacy. I’ve compiled the tips and strategies you need to stay grounded and confident through it all. I made it for NICU but it’s applicable in many places.
