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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 when Macie was one month old, where she underwent a successful right lower lobectomy. The mass was later diagnosed as bronchial atresia. Today, at three years old, Macie is healthy, thriving, and full of life.
My husband and I found out in August 2021 that we were expecting a baby girl. We decided to name her Macie Karoline. Her first name means “Gift from God” and her middle name means “strong.” Both are extremely fitting for her story.
At the 20 week anatomy scan, we were told that she had a rare lesion on her right lung. We were referred to MFM specialists at UAB Hospital in Birmingham, Alabama where they measured the mass every 2 weeks. During this time, I did a lot of research and sought out other moms with similar stories. I found that Children’s Hospital of Philadelphia (CHOP) specialized in these types of lung lesions. Unfortunately, we live 15 hours away.
When Macie was born, we needed to get her to CHOP within a month to have the mass removed. She was born in March 2022 and appeared healthy and asymptomatic, though as a well-baby RN I noticed her heart rate was a bit high and her breathing seemed faster than usual.
We flew with Macie to Philadelphia on April 5, 2022. We had an amazing support system in Philadelphia; our hotel expenses were paid for by the Ronald McDonald House and the people there were so wonderful and welcoming. I highly recommend this resource for parents who are worried about the financial strain of temporarily relocating for your child’s surgery.
Macie had her CT scan at CHOP on April 6, 2022, which showed a mass on her right lung. We were told surgery was needed immediately because air had become trapped in the mass itself. The next day Macie had surgery: a right lower lobectomy to remove the lung mass. She was in a lot of pain for the first couple of days and required pain medication. It was so hard seeing our newborn suffer but she got better each day. She fought so hard!
Macie, her mom and her dad at CHOP
On April 11, Macie was discharged from the hospital. Her surgeon didn’t want us to take her home to Alabama immediately in the event something went wrong, so we stayed a few days to allow her to recover and so she could have a post-operative appointment before we flew back home. (I’ve never eaten so many Philly cheesesteaks in my life!)
Finally, on April 15, we flew back home to Alabama with our sweet girl! I have tears in my eyes even writing that because the beginning of our pregnancy was under this dark cloud and now that no longer lingered over us. We realized we could now just enjoy our baby and look forward to the future with her.
Macie’s mass was biopsied and we were given the definitive diagnosis of Bronchial Atresia a few weeks later. We learned that it is extremely rare and doctors don’t know much about them. We gave Macie’s surgeon all rights to the mass so he and further research teams at CHOP could study it.
Macie is now 3 years old. She’s the most perfect little girl—full of life and a good dose of sass! We never take a moment with her for granted. She’s brought joy and wholeness to our lives in ways we never expected.