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By Alyce Collins
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A mom has opened up about the rare condition that means her toddler has a permanent "mask-like face" that stops him from forming expressions.
Following a textbook pregnancy without any concerns, Jeannie Hochstetler of Indiana welcomed her first child on January 29, 2025. She told Newsweek that there were "no concerns" ahead of her son’s birth, and the only sign of anything unusual was that her stomach measured small. At the time, Hochstetler, 28, believed she was having a small baby, which is not uncommon.
However, it quickly became evident that something was wrong following Riley’s birth.
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"He did not cry when he was born and I assumed he needed a little support adjusting to the outside world," Hochstetler said. "They whisked him away and placed oxygen on him. I remember the doctor standing above him with his chin in his hand for what seemed like hours. Looking back, I realize he knew something was wrong, he just didn’t know what."
Riley was transferred to the local NICU ward at a hospital 40 minutes away.
Further assessment revealed that Riley has small, webbed hands, and is also missing his right pectoral muscle. Additionally, doctors were unable to open his mouth very far, so Riley was placed on CPAP and given an NG tube for feeding. Nevertheless, Riley "remained a mystery" as doctors struggled to diagnose him.
He remained in the NICU for weeks as his condition was assessed. Ultimately, one of the doctors in the ward suggested that Riley could have Poland-Moebius Syndrome, a rare congenital condition that causes facial paralysis and underdeveloped chest muscles.
Given the complexities of Poland-Moebius Syndrome, Riley was transferred to a larger NICU three hours away.
"This was one of the hardest parts for me. I was two weeks postpartum, watching strangers load my baby into a helicopter—what a wild introduction to parenthood," Hochstetler said.
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At three weeks old, Riley was officially diagnosed with Poland-Moebius Syndrome. The 'National Institutes of Health (NIH) suggests that Moebius Syndrome occurs in an estimated one per 50,000 live births, causing the underdevelopment of facial nerves that control expressions and eye movements. People with Moebius Syndrome can experience trouble swallowing, difficulties with speech, inability to smile or frown, hearing problems and motor delays.
Poland syndrome is often linked to Moebius Syndrome, leading to missing or underdeveloped chest muscles.
It was a whirlwind moment when Hochstetler was told her son’s diagnosis. She had never heard of either condition, so there was a lot of uncertainty about Riley’s future.
She said: "Hearing that my baby would never smile at me was one of the hardest parts. I remember feeling grief because this was not the parenthood I envisioned. I also felt sadness for my baby and all the things he had already endured and would have to endure.
"We were told that each case of Moebius is different, and we would just have to wait and see how severely Riley was affected. They told us he would not be able to form facial expressions or blink, he would have difficulty feeding, and he would be delayed with milestones."
There is no cure for Moebius Syndrome, so the family can only treat the symptoms and manage Riley’s condition.
Riley is missing his seventh cranial nerve, which is responsible for facial movement and he has restricted eye movement. However, he has continued to adapt and conveys his emotions in a variety of other ways.
Riley uses a G-tube for feeding, but Hochstetler hopes to introduce oral feedings when his swallow gets stronger.
"He has also had a strabismus surgery done at 13 months old to correct his crossed eyes," she explained. "At the same time he also had a surgery performed to fix eyelashes that laid on his eyes. He’s had two MRIs done and multiple ABRs (hearing tests). Riley has mild hearing loss in his left ear."
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"He has the best laugh in the world and it’s my favorite sound," Hochstetler told Newsweek. "He also does not hesitate to use his voice when he’s not happy. I’ve also become adept at reading his body language to know what he’s feeling."
"His condition is non-progressive, which means what he’s born with won’t get worse. With therapy a lot of things can improve, and they already have. He is so adaptable and clever—he figures out how to do things in his own way. He amazes me," she continued.
Following Riley’s diagnosis, Hochstetler has been documenting her family’s experiences on social media (@jeanniebontrager on TikTok) to raise awareness of Moebius Syndrome. Riley has taught her so much about strength and resilience, and Hochstetler hopes to show that love can be shown in so many different ways.
Hochstetler said: "He is my biggest blessing, and I am so incredibly thankful to be his mom. He has been through so much in his short life and yet he still is one of the happiest babies."
Contact Newsweek editors on this story: Charlotte Nisbet and Tony Phillips
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