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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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7/ Evan’s Story
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.
5/ Macie’s story
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.
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.