Stephanie’s Story – A daughter with functional short bowel syndrome

Podcast Show Notes

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

Child Life On Call | Instagram | Facebook | Twitter | Email

You Might Also Like…

Episode 189 | Ryan’s Story- A son with Costello Syndrome

Meet Ryan Sheedy, an incredible father who, much to his own surprise, found himself immersed in the delightful chaos of caring for twin boys. His world drastically transformed ten years ago, when he moved from Pennsylvania to Bentonville, Arkansas. Not only has Ryan...

Episode 188 | Rhandyl and Deonna’s Stories from Raising Disabled

Does this sound familiar? Are you a parent of a disabled child, feeling overwhelmed and isolated? Maybe you've been told to simply toughen up and handle it on your own. But that advice only deepens the pain of loneliness and frustration. It's time to break free from...

Download the Comfort Positioning Guide



Being close to a trusted adult is powerful. It lessens pain and brings comfort when kids need it most. This guide shows you how to keep kids safe, and help them feel supported, during medical procedures. From the Meg Foundation for Pain and Child Life On Call.

Your download is heading to your inbox now!

Parents, Transform Your Child's Medical Experience

The only course you'll ever need to know how to prepare, support and respond to your child during any poke, vaccine or painful procedure. Expert-guided and evidened-based, we make sure you feel completely equipped before your chlld's next medical visit.

Check your email for the course link!

Pin It on Pinterest

Share This