Mother Shares Her Toddler’s Journey with Poland-Moebius Syndrome

A mother from Indiana, Jeannie Hochstetler, has shared her experience of her son’s journey with a rare condition called Poland-Moebius Syndrome. Her toddler, Riley, born on January 29, 2025, exhibits a permanent expressionless face due to this rare condition.

Riley’s early birth appeared normal, though Jeannie noticed her stomach was small during pregnancy, suggesting a small baby. The situation changed post-birth when Riley didn’t cry. Medical staff placed him on oxygen, indicating concerns. They soon discovered he had small, webbed hands and was missing his right pectoral muscle. Feeding difficulties followed as doctors couldn’t open his mouth far enough. A CPAP machine and an NG tube were used initially.

Despite these signs, the diagnosis remained elusive. After weeks of analysis in NICU, a doctor proposed Poland-Moebius Syndrome. This rare congenital condition is characterized by facial paralysis and underdeveloped chest muscles.

Once diagnosed, Riley was moved to a larger facility for specialized care. Jeannie described the challenge of watching him transfer at only three weeks old. The National Institutes of Health reports that Moebius Syndrome affects about one in 50,000 live births.

Moebius Syndrome impacts facial nerve development, leading to issues with expressions, eye movement, and speech. Patients like Riley may struggle with swallowing and experience motor delays.

Poland Syndrome often coincides with Moebius, resulting in underdeveloped chest muscles. Jeannie was unfamiliar with these conditions, leading to uncertainty about Riley’s future. She expressed deep sadness learning her son may never smile.

The condition is non-progressive; however, symptoms are managed rather than cured. Riley’s seventh cranial nerve is missing, impacting facial and eye movements. He currently uses a G-tube for feeding but shows promise in future oral feeding.

Surgeries have addressed crossed eyes and eyelash issues. Riley also underwent two MRIs and hearing tests, revealing mild hearing loss in his left ear. Despite challenges, his laughter brings joy to his family, and he communicates effectively through body language.

Jeannie emphasized Riley’s adaptability and cleverness. His condition has improved through therapy, showcasing his resilience. Since the diagnosis, Jeannie documents her family’s experience on social media (@jeanniebontrager on TikTok) to raise awareness about the condition. She highlights the strength and different ways to express love, noting, “He is my biggest blessing.”

For further details, contact the Newsweek editors, Charlotte Nisbet and Tony Phillips, regarding this story. If you have health concerns, you can reach out to Newsweek at [email protected] for expert advice.