We’re a parent-led grassroots project providing education, support, and connection for families navigating congenital lung malformations — while building awareness and supporting research.

New diagnosis? Start here
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Welcome

If you’ve just heard your baby has a congenital lung malformation like CPAM/CCAM, BPS, bronchial atresia or congenital lobar emphysema, take a deep breath. You’re in the right place.

Here’s how we support families like yours

Education

We provide clear, accurate and up-to-date materials, guides and tools on congenital lung malformations, always carefully reviewed and edited by a medical expert.

Understand the diagnosis

Connection

Text or email with a trained parent volunteer who has been through this diagnosis before. If you want ongoing support, we also offer longer term 1-on-1 connections.

Talk to a parent

Family stories

We share real life stories from families who have been through a congenital lung malformation diagnosis and come out the other side.

Read family stories

A congenital lung malformation (CLM) is a rare condition where part of a baby’s lungs did not develop normally during pregnancy. The two most common types of lung malformation are CPAM and BPS.

Latest articles

Featured
Welcoming Dr Shaun Kunisaki as a Medical Advisor
Myth #4: “A clear X-ray means the lesion is gone”
January updates!
Myth #3: “Most CLM babies can’t breathe at birth”
Myth #2: “CLMs are getting more common”
Myth #1: “I did something to cause this”
January is “Myths vs Facts” Month
We're Here: Welcome to CPAM Parents

1 in 2,500

the estimated number of babies born with a CLM

90%

of babies born with a low-risk CLM will be asymptomatic at birth

70%

of CLMs are currently diagnosed prenatally

Latest family stories

Family Stories
7/ Evan’s Story
7/ Evan’s Story

Terrified after a prior scan scare, Evan’s parents heard “we need the doctor” and learned their baby had a lung malformation with a large feeder vessel. Although prenatal imaging later looked clear, a CT at two months revealed major blood diversion. Surgery at 2.5 months was hard, but Evan recovered and is thriving today.

Read More →
6/ Lexie’s story
6/ Lexie’s story

At 36 weeks, Lexie was diagnosed with a large macrocystic CPAM that had been missed earlier in pregnancy. After struggling to get clear answers locally, her parents transferred care to the Children’s Hospital of Philadelphia (CHOP), where an experienced surgical team delivered and operated on Lexie immediately after birth. Despite the severity of her lung lesion, she recovered quickly and today—at 4.5 years old—is thriving and completely healthy.

Read More →
5/ Macie’s story
5/ Macie’s story

At their 20-week anatomy scan, Macie’s parents learned that their baby girl had a rare lung lesion. After close monitoring in Alabama, they traveled to the Children’s Hospital of Philadelphia (CHOP) when Macie was one month old, where she underwent a successful right lower lobectomy. The mass was diagnosed as bronchial atresia. Today, at three years old, Macie is healthy, thriving, and full of life.

Read More →
4/ Kayla’s story
4/ Kayla’s story

After two miscarriages, a mother's third pregnancy brought both hope and fear when her daughter was diagnosed with CCAM (now called CPAM) at 20 weeks. Born early at 35 weeks, Kayla was asymptomatic and underwent a successful surgery at three months old. Now a happy healthy eleven year old, Kayla is thriving with no long-term effects.

Read More →

Talk to a parent

Sometimes you don’t need more links—you need a human who gets it.

Text ‪+1 (760) 650-2726 ‬or email talk@cpamparents.org to chat with a parent volunteer who has navigated this diagnosis before.

  • We’ll respond as soon as possible, normally within 24 hours

  • Peer support and practical guidance—this is not medical advice

For clinicians

CPAM Parents provides clinician-reviewed, plain-language education and trained parent-to-parent peer support for families navigating congenital lung malformations. Our programs support parental mental health and coping both prenatally and postnatally, and we also build public awareness and support research efforts in the CLM space.

Get in touch