The Moment We Knew Things Would Never Be “Normal” – 010

May 22

Stephanie was excited, like any mother, to see her baby at her 20 week ultrasound.  When the ultrasound tech showed concern and then called in a doctor, Stephanie and her husband knew their world was about to change.

They learned that their daughter had a rare congenital condition called Fibular Hemimelia, where the fibula bone is short or missing (along with associated bone length discrepancies).  The news that their daughter would likely have to have her leg amputated early in life was very difficult to hear – but Stephanie and her husband were able to remain positive.

Stephanie’s storytelling of Charlotte’s first surgery is poignant and emotional.  Thrown right off the bat into the deep end of parenting, she has learned how to let go of control, focus on her bond with her daughter, and accept what normal is for their family.  Yearly prosthesis changes, hospital visits and helping her daughter advocate for herself are all part of theirs!

We learned that we need to keep tissues in the studio – and we think this episode will give you all the feels too.


Show Notes:

Info about Fibular Hemimelia









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