Share your family’s story
We are building the largest global repository of lung malformation stories.
Sharing your family’s experience with a lung malformation can make a world of difference for others starting to walk the same path. When parents first hear this diagnosis, it is often confusing, frightening, and overwhelming. Reading a real story from someone who’s been there can offer comfort, hope, and practical insights that medical facts and hospital resources alone can’t provide. By sharing your journey—the challenges, the questions, the milestones, and the moments of relief—you help other families feel less alone and more prepared.
We also hope that these stories will be a resource for medical professionals, giving them a better idea of what it is like to go through this experience as both a patient and a parent. In this way, we hope medical professionals will be better able to help and support families going forwards.
I want to share my story. What should I include?
Think about what would have been helpful for you and your family to know when you were first given the diagnosis. There are two main pieces of information new parents really want to know: what happened during the pregnancy and what happened at the birth. Here are some things to consider when putting your story together:
It’s helpful for families to know a little bit of background about the pregnancy up until the diagnosis (if your baby was diagnosed prenatally)—is this your first child? How had the pregnancy been up to this point?
Parents want information on the trajectory of the lung malformation during pregnancy:
what was the starting CVR or measurements, if known
what was the initial diagnosis (and did this change)
did the CPAM/BPS/lesion grow
did the CVR change
did you need any interventions during pregnancy
Parents want to know what happened at the birth:
did you give birth at term (38+ weeks)
were there other complications (e.g. gestational hypertension, gestational diabetes)
was your baby symptomatic or asymptomatic at birth
did your baby require NICU time
Parents want to know if your child had surgery or not:
did your medical team recommend surgery
if so, when did your child have surgery
what was the surgery experience like
Parents want to know how things are now
how old is your child now
are there any long term effects from the CPAM/BPS/lesion
does your child need regular check-ups or imaging?
what advice would you give now to someone just getting the diagnosis
Parents also find it reassuring to hear a bit about what the emotional experience is of going through a lung malformation diagnosis. Feel free to share how you felt at different stages of your journey. How did you navigate this experience? What was helpful? What was unhelpful? Including these smaller details can really resonate and bring comfort to new parents. Also feel free to give any words of advice or support you would like new parents to know.
What to expect when you submit your story
The submission form will ask for some details about your experience. We welcome all experiences, whether they were high risk or low risk, big lesions or small lesions, no NICU time or lots of NICU time. We ask for your child’s real name in the submission form, but please note this will not be published—we use pseudonyms for all children. There is then space for you to paste your story. After you submit someone will be in touch soon. We will likely make some edits to your story for readability purposes but we will never change the meaning or intention of what you write. You will always be given the final version to review before it is published on CPAMparents.org
Be kind to yourself
Many people find the process of sitting down to write their family's lung malformation story much more intense than they'd anticipated. Take your time and take frequent breaks. If you need to put it away for a week and then come back to it, listen to what you need. After you’ve written it, whether you choose to submit or not, we hope the process of getting it all down has been helpful and maybe even healing.
When you’re ready to submit your story please use the link below…