Congenital Lung Malformation Family Stories
The stories here are real personal experiences generously shared by parents in our community. Please honor their trust by reading with compassion, remembering that each family’s journey is unique. To protect privacy, some names have been changed.
Has your family been through a lung malformation journey? Please consider sharing your story.
BROWSE STORIES BY DIAGNOSIS
BY EXPERIENCE
BY COUNTRY
10/ Cillian’s Story
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.
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.
3/ JJ’s story
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.
1/ Billy’s story
A rocky pregnancy with an extralobar BPS (bronchopulmonary sequestration) and an unexpected stay in the NICU