We're Here: Welcome to CPAM Parents
I’ll never forget the feeling of lying in that dark ultrasound room and hearing the word “CPAM” for the first time. My easy pregnancy suddenly wasn't. Instead of getting excited about the future, planning a nursery, and buying cute newborn clothes, I was Googling medical terms, reading dense academic journals, and trying to understand what this meant for me, my pregnancy, and my family.
If that's where you are right now: you're not alone.
Today—to coincide with Child Health Day 2025—we officially launch CPAMparents.org, a resource built by parents, for parents navigating congenital lung malformations. We exist because too many families face those earliest, scariest moments after diagnosis alone and unsure of the journey ahead.
Why CPAM Parents Exists
Born from conversations among four moms after their babies’ CLM journeys, CPAM Parents brings together emotional and practical support: clear, clinician-reviewed information and a peer-support program of trained volunteers. We wanted one trusted place that shares complex medical information, while honoring the real questions families ask, and a way to connect one-on-one with parents who have walked this road already. This is the website we wish we’d had at the moment of diagnosis.
What We Offer
Our Education Hub breaks down the science and the medical journey. You'll find guides that explain diagnostic tests, treatment options, and what different CVR ratios actually mean—not just what they're called. There's a glossary for those moments when your doctor uses a term you've never heard, and fact sheets you can share with family or friends who want to help but don't know where to start.
Our Parent Connections Program is a peer support program that matches you with a trained parent volunteer who has been through this diagnosis. These amazing volunteers are ready to listen to what you’re going through, help you process, and offer the kind of understanding and encouragement that can only come from someone who really gets it.
The Family Stories section shares real experiences from parents further down this road. Every story is told with permission and care with the hope that reading other families’ experiences will help others feel less alone.
Our Resources page gathers trusted sources of practical and emotional support, plus tools for appointments, words of comfort, printable checklists, question prompts, and mental health resources for pregnancy and postpartum.
Our Promises to You
Everything here is free and accessible. No paywalls, no logins, no premium tiers, no strings attached. Medical content carries the stamp of clinical review—we're grateful to Dr. Marisa Schwab, pediatric surgeon at Stanford Children’s Health, and other experts who ensure we get the details right. We're starting with resources most relevant to families in the U.S. with plans to expand globally as we grow.
We will never tell you what decision to make for your child. We're not here to replace your medical team—we're here to help you work with them more effectively. Better questions, clearer understanding, more confidence in you and your baby’s care.
How to Get Started
Jump into the Education Hub and browse before your next appointment. Read a family story when you need to remember you're not doing this alone. Sign up with the Parent Connections Program to start a conversation with a parent volunteer. And when you're ready—if you're ready—consider volunteering with us or sharing your own experience to light the path for someone else.
A Note of Gratitude
To the parent communities on Facebook: you've been holding families together for years with your generosity and wisdom. We're not here to replace that—we're here to add another tool to the kit. To the clinicians who've given their time and expertise: thank you for helping us build something families can trust.
And to you, reading this in the thick of uncertainty: we get it. You're doing an incredible thing under impossible circumstances. You're learning a new language, advocating fiercely, and loving harder than you knew possible. We built CPAM Parents so you'd have one less thing to figure out alone.
Welcome. We're so glad you're here.
Emily Lake
Founder & Executive Director
CPAM Parents