Jeannie Hochstetler had a “no concerns” pregnancy in 2024 and was thrilled to become a mother for the first time.
However, when the 28-year-old Indiana native gave birth to her son on January 29, 2025, she was left searching for answers to why he did not cry or failed to form an expression instead of celebrating.
Riley, now a year and a half old, has been diagnosed with a condition that affects facial movements and occurs in approximately one in 50,000 newborns.
“Hearing that my baby would never smile at me was hard,” Hochstetler said in a recent interview.
A mother has revealed how her toddler’s rare condition leaves him with a mask-like face
Image credits: jeanniebontrager
When Riley did not cry after birth, Hochstetler, according to her July 26 interview with Newsweek, believed “he needed a little support adjusting to the outside world.”
However, she recalled that she soon saw doctors place him on oxygen, with one of them “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.”
Image credits: jeanniebontrager
Riley was then transferred to a NICU at a local hospital 40 minutes away.
Assessment there revealed that the child had small, webbed hands and was also missing his right pectoral muscle.
Additionally, doctors were unable to open his mouth very far, so he was given a feeding tube.
Riley was diagnosed with a rare congenital condition called Moebius syndrome
Image credits: jeanniebontrager
According to Hochstetler, one of the doctors in the ward suggested that Riley could have Moebius syndrome, a rare congenital condition that causes facial paralysis and also explains his other observed complications.
Given the specialized care requirements of the potential condition, Riley was transferred to a larger NICU three hours away.
Image credits: jeanniebontrager
Hochstetler described seeing her baby being loaded into helicopters for the transfers as “a wild introduction to parenthood.”
Riley was three weeks old when he was officially diagnosed with Moebius syndrome.
The National Institutes of Health (NIH) states that babies with this condition can experience difficulties with speech, hearing problems, and motor delays, in addition to an inability to form facial expressions and difficulty swallowing.
The mother had to wrestle with the fact that her baby would never smile
Image credits: jeanniebontrager
“I remember feeling grief because this was not the parenthood I envisioned,” Hochstetler said.
“I also felt sadness for my baby and all the things he had already endured and would have to endure,” she added.
The mom remembered being told that each case of Moebius syndrome is different and that “we would just have to wait and see how severely Riley was affected.”
Riley is missing his seventh cranial nerve, which is responsible for facial movements, and he also has restricted eye movement.
Image credits: jeanniebontrager
At 18 months old, he still uses a G-tube for feeding, but Hochstetler hopes to introduce oral feedings once his swallowing ability becomes stronger.
The toddler underwent strabismus surgery at 13 months old to correct his crossed eyes.
At the same time, he also underwent surgery to correct his eyelashes, which were obstructing his vision.
Furthermore, after multiple hearing tests, Riley was confirmed to have mild hearing loss in his left ear.
Hochstetler remains hopeful for Riley’s future, hoping therapy will help him reach his full potential
Image credits: jeanniebontrager
The mom gushed about her son’s laugh while speaking with Newsweek, calling it her “favorite sound” in the world.
She also said he has learned to use his voice to express agitation, while she has become adept at reading his body language to understand how he is 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,” Hochstetler said.
She added: “He is so adaptable and clever—he figures out how to do things in his own way. He amazes me.”
Image credits: jeanniebontrager
Hochstetler called Riley her “biggest blessing,” noting that she is “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.”
The mom has been raising awareness about Moebius syndrome on social media
Image credits: jeanniebontrager
Known as Jeannie Bontrager on TikTok, Hochstetler uses her platform to share updates about Riley’s life and educate others about the rare condition.
In one video, she revealed that although Riley is fed through a feeding tube, he still enjoys tasting new foods.
Image credits: jeanniebontrager
In another post, Hochstetler showed Riley crawling across the floor like any other toddler, captioning it: “Hypotonia isn’t stopping him from exploring.”
Hypotonia, or abnormally low muscle tone, can make a child appear “floppy” or “like a rag doll,” Hochstetler explained.
She added that hypotonia is a common symptom of Moebius syndrome and, while it may delay Riley’s mobility, it is not expected to prevent him from reaching any developmental milestones.
“The world is a better place because he’s in it,” a netizen said about Riley
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