Kalliope

A Beckwith–Wiedemann Syndrome Warrior

Kalli is truly the happiest baby there is, but that wasn’t always the case.

From just a few weeks old, she began vomiting over 16 times a day, which led to multiple hospital admissions. Around 3 months old, Kalliope had a G-tube placed to trial slow, continuous feeds due to delayed gastric emptying.

That helped for a while, but she continued to struggle. After another admission for weight loss and dehydration, Kalli underwent a Nissen fundoplication to prevent her from vomiting and losing weight. The surgery was successful and completely changed her quality of life.

She is now a chunky, thriving, happy baby!

After her surgery, we were referred to genetics, where we learned that Kalliope has Beckwith–Wiedemann Syndrome (BWS), a genetic disorder that causes overgrowth and increases the risk of certain childhood cancers. Because of this, she has routine cancer screenings every 3 months, including AFP lab work and abdominal ultrasounds.