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.
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.