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
11/ Aaliyah’s Story
Aaliyah was diagnosed with a large high-risk CPAM at the 20 week scan. After steroids didn’t slow down the CPAM’s growth, she developed hydrops and a shunt procedure was performed to drain the mass. She was born symptomatic, had surgery at 2 months old and is now a happy and healthy 20 month old! Her mom shares the family’s story.
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.
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.
2/ Lena’s story
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.