Navigating congenital lung malformations together
We’re here to support anyone affected by CPAM/CCAM, BPS, CLE, CBA, and other CLMs
A congenital lung malformation — or CLM — is a rare condition where part of a baby’s lungs did not develop normally during pregnancy. CPAM/CCAM is the most common type of CLM.
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Our work
70% of CLMs are diagnosed prenatally. That often means stressful pregnancies, disrupted birth plans, and confusing decisions about possible surgery and long-term management.
There are currently no internationally agreed-upon guidelines or standards of care for managing CLMs.
Families are too often faced with out-of-date or inaccurate information and conflicting advice that can vary from country to country and hospital to hospital.
We support families and individuals at any stage of a CLM journey, helping you feel less alone, better informed, and more confident as important members of your child’s care team.
How we help
We provide a variety of connection and support options for anyone affected by a CLM, from texting with a volunteer to ongoing peer support and reading real life community stories.
We create clear, accurate and up-to-date materials, guides and tools on congenital lung malformations, always carefully reviewed by medical experts.
We support research and work alongside expert clinicians to learn from each other and break down barriers between medical teams and families to advance our understanding of these rare abnormalities.
My baby has just been diagnosed with CPAM or another CLM
Learning there is something wrong with your baby’s lungs can be stressful, isolating, and overwhelming.
We're here to help you feel less alone, better informed, and more confident as an important member of your child’s care team.
Every week our trained parent volunteers support parents affected by a congenital lung malformation — from diagnosis to birth to surgery and beyond.
Reach out to learn more about how we support families like yours.
Birth and postnatal
Some children will need help breathing at birth or may become unwell during childhood. We’re here for you at every stage: from the NICU to the OR and beyond.
Surgery
We offer support, guidance, and resources to families who are preparing for their child’s lung malformation surgery.
There are several main types of congenital lung malformation
CPAM (or the old name CCAM) is a mass of non-functioning lung tissue and the most common CLM.
A bronchopulmonary sequestration (BPS) is similar to CPAM but the blood supply comes from outside the pulmonary system.
Bronchial atresia (CBA) is a blockage in part of the lungs, so air can’t move in and out normally.
Congenital lobar emphysema or overinflation (CLE) is a condition where part of the lungs becomes overinflated, pushing on other lung tissue.
You are an important part of your child’s care team
You don't need a medical degree to advocate for your child, but understanding the basics makes a real difference. We create expert-reviewed materials and get you the information that matters so you can participate fully in your child's care with confidence and clarity.
Real voices
Have you been through a lung malformation journey?
We would love to hear from you. We are always looking for compassionate volunteers to support newly diagnosed families: all experiences and all countries welcomed.