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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.

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All Symptomatic Asymptomatic CPAM BPS CBA USA NICU
6/ Lexie’s story
CPAM, USA, Symptomatic, NICU Emily Lake CPAM, USA, Symptomatic, NICU Emily Lake

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.

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2/ Lena’s story
CPAM, USA, Asymptomatic Emily Lake CPAM, USA, Asymptomatic Emily Lake

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.

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