We’re a parent-led grassroots project providing education, support, and connection for families navigating congenital lung malformations — while building awareness and supporting research.
Welcome to our community
Here’s how we support families
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.
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.
Family stories
We share real life stories from families who have been through a congenital lung malformation diagnosis and come out the other side.
90%
of babies born with a low-risk CLM will be asymptomatic at birth
1 in 2,500
the estimated number of babies born with a CLM
70%
of CLMs are currently diagnosed prenatally
Latest posts
Talk to a parent
We provide clear and compassionate peer support for families navigating a congenital lung malformation diagnosis.
Text: +1 (760) 650-2726
or
email: talk@cpamparents.org
A parent will respond as soon as possible, normally within 24 hours
We provide peer support and practical guidance—we do not provide medical advice
Latest family stories
Cillian’s family navigated his prenatal CCAM diagnosis (now called CPAM) alongside his father’s battle with cancer. Juggling a high-risk pregnancy, chemotherapy appointments, and early surgery at just two weeks old, the family made it through and Cillian is now a happy, healthy, active boy. Cillian’s mother shares their story of love, hope, and resilience.
MM was diagnosed prenatally with a small lung mass. She was born asymptomatic and later a CT scan confirmed a hybrid lesion with a feeder vessel. After a second opinion at CHOP, she had a successful resection at 3.5 years old, recovered well, and her 6-month post-op X-ray looked great with no further follow-up needed.
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.
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.
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.
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.
Diagnosed in utero with a hybrid CPAM/BPS lesion, baby JJ faced a complicated start to life. His mother shares their powerful journey through uncertainty, a NICU stay, successful surgery, and the gratitude and wonder she feels watching her little boy thrive today.
During her first pregnancy, Lena’s mom learned at 20 weeks that her baby had a large, high-risk CPAM. After two courses of prenatal steroids and a CVR that peaked at 2.6, the lesion’s growth stalled — and Lena was born healthy and asymptomatic at 39 weeks.
A rocky pregnancy with an extralobar BPS (bronchopulmonary sequestration) and an unexpected stay in the NICU