Episode 23 | Stephanie's Story - A daughter with functional short bowel syndrome
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
English - March 18, 2019 09:00 - 56 minutes - 78 MB - ★★★★★ - 78 ratingsParenting Kids & Family Health & Fitness Medicine nurse parents resident cancer child childlife childlifespecialist condition disease doctor Homepage Download Apple Podcasts Google Podcasts Overcast Castro Pocket Casts RSS feed
After a long fertility journey and a high risk, stressful, and very sick pregnancy, Stephanie gave birth at 26 weeks due to severe preeclampsia.
Stephanie, mom to Adeline, shares her experiences in the NICU and describes Addie’s difficulty with digestion. A long road of unknowns eventually led to a diagnosis of functional short bowel syndrome.
Stephanie shares her perspective about important topics like how having a child with an "invisible disease" can be a blessing and a curse, how she actually felt relief when they received Addie’s diagnosis, and how she handles tough to answer questions from well-meaning friends and families.
Stephanie talks about how she has been an advocate for her daughter and fought for a diagnosis, and how she continues to fight to give her daughter the best care possible and her family travels every 4 to six weeks to Boston from Baltimore to get Addie around and in front of experts in the field. Listen to Stephanie's story on the Child Life On Call Podcast.
Follow Stephanie and Addie: @addie.belle + She Got Guts
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