Doctors Said He Might Never Smile. But Every Time He Gets the Hiccups, He Proves Them Wrong (Exclusive)

NEED TO KNOW

• When Roxy and April’s newborn son was born silent and expressionless, doctors insisted nothing was wrong

• Trusting her gut, Roxy researched his symptoms herself — and uncovered a rare diagnosis doctors had missed

• Now, a single, unexplained smile caught on video during Santi’s hiccups has turned him into a viral symbol of hope

When 2-year-old Santi gets the hiccups, something happens that doctors still can’t explain: his paralyzed face lights up with a fleeting, beautiful smile.

It’s a moment so rare and unexpected that it’s gone viral in a TikTok clip, drawing millions into the life of a little boy who might not be able to smile at all.

“We were like, are we tripping here? Are we seeing what we’re seeing?” mom Roxy tells PEOPLE, recalling the first time she and wife April witnessed their son’s face break into a grin. “Every single time he gets the hiccups, we record him.”

Born with Moebius syndrome, an extremely rare neurological disorder that paralyzes the facial muscles, Santi has never had what some would consider a “typical” journey. But no one — not even his mothers — could have predicted just how many odds he would defy.

Roxy and April, partners for 16 years, built their family through reciprocal IVF: Roxy carried their first three sons using April’s eggs. Later, when April carried their fourth child using Roxy’s eggs, the journey took a far more uncertain path.

“I was only creating one or two embryos each cycle, which is not common and especially for my age,” Roxy explains. Their final embryo, considered a mosaic, was a last shot.

Just a few weeks into the pregnancy, April began spotting. A doctor told her it was the start of a miscarriage and handed her pills to terminate. “She was so mad at this point that she just wadded it up and threw it in the trash,” Roxy says of the meds. “We were really upset, because if there was still a heartbeat, why would you recommend that?”

They later learned that taking the pills would have ended the pregnancy — and Santi’s life. “This baby already had just been fighting all the odds,” Roxy says.

Nonetheless, early ultrasounds flagged multiple concerns: small femurs, club feet and an umbilical vein abnormality. Still, genetic testing showed no abnormalities, and doctors assured the couple everything was “fixable.”

“I was stressed out the whole pregnancy,” Roxy admits. “My wife was like, it’s fine … but deep down, I knew something more was happening.”

April was induced at 37 weeks due to growth restriction, and after four long days of labor, Santi was born. But from the first breath, Roxy sensed something was terribly wrong.

“He never cried, which was kind of odd to me, but his eyes were rolling in the back of his head,” she says. “He had really no facial expression, so I was super concerned.”

Despite her concerns, nurses reassured her everything was fine. “I’ve had three boys. I know that it’s not,” she remembers thinking. For three days, Santi didn’t cry, didn’t latch, didn’t blink. He stared wide-eyed and expressionless at his mothers, as Roxy stayed up late Googling every symptom.

By day three, she had a gut feeling and scoured the Internet for answers before she stopped at Moebius syndrome.

According to John Hopkins’ Medicine, “Moebius syndrome is a rare congenital (present at birth) condition that results from underdevelopment of the facial nerves that control some of the eye movements and facial expressions.”

“I had never heard of it in my life,” she says. “But I just felt like, okay, this might be what my baby has.” When their pediatrician returned from vacation, she listened and within hours, Santi was admitted to the NICU.

A specialist confirmed what Roxy had feared. “He could be in a vegetative state for the rest of his life. He could pass away,” the doctor told them. “It was devastating,” Roxy says. “At the moment it’s like, gosh, what else could we be tried with?”

April, still weak from losing blood during delivery, was left emotionally reeling. “The whole pregnancy, there was never a time where I was like, ‘Okay, I’m comfortable,’ ” she tells PEOPLE.

A feeding tube was inserted after a swallow study showed Santi was silently aspirating, with fluid going into his lungs instead of his stomach. “He had lost over a pound-and-a-half in those four days,” Roxy says.

Even at the children’s hospital, doctors weren’t familiar with Moebius syndrome. Some had only read about it in textbooks.

“Had we left him untreated and come home … what could have happened?” Roxy says. “I don’t know. He could have starved to death.”

The viral hiccup video has since connected them with a global network of families. “Every single mother I’ve talked to had to advocate for their kids to get them diagnosed,” Roxy shares.

Today, daily life is filled with challenges: Santi is growth-restricted, needs hour-long feeds six times a day through a G-tube and gets constant care. “He needs eye drops so his eyes don’t dry out because he can’t blink,” Roxy says.

Family outings are planned down to the charger cord for his feeding pump. “Being a medically challenged parent is just not something we ever fathomed,” she says.

Still, the hiccup smile has become a beacon of hope. “Every time he gets the hiccups, he still smiles,” Roxy says. “It makes us so happy.”

Doctors can’t explain it. “We talked to his neurologist, and he said maybe there’s nerves coming in from the back trying to compensate,” she recalls. “But he said, ‘I don’t know. We don’t have enough research on Moebius to know.’ ”

For Roxy and April, that fleeting smile is proof of something powerful and mysterious — and a moment they freeze-frame and cherish every time it comes.

They’ve already spoken to specialists about potential smile surgery when Santi turns 4. It’s an expensive, complex procedure, but it could give him the ability to express what he already feels inside.

“Maybe Santi’s face, his nerves are not as affected,” Roxy says. “So the surgery might work well.” She and April have created a GoFundMe page to raise money for his coming surgery.

“For us, it seems like a little tiny smile on him,” she says. “People [also] say he looks like a Precious Moments doll. But more importantly, now they know what Moebius syndrome is.”

And they’re learning what it isn’t. “The main misconception is that they’re not happy,” Roxy says. “Santi is a super happy baby. He just can’t smile.” April agrees. “People think they’re severely delayed. They talk to them like they’re not there. And they do understand. They do.”

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The family has found solace in the Moebius community, online and beyond. “Families reach out to me in Spanish and English,” Roxy says. “A woman from Ecuador wrote to me this morning.”

Santi’s videos have become a lifeline to others, just as other videos once were for his own family. “When I was researching Moebius, the first place I went was TikTok,” Roxy says. It was there she saw other families thriving and believed they could, too. “It gave us such peace of mind.”

The family’s days are filled with therapy, caretaking and love. “It’s so unique to have a family with all special needs children,” Roxy says. “But I think April and I have been strong through this.”

She hopes the world will catch up and offer the same grace. “Moebius syndrome does not define anybody,” she says. “Just because you don’t see the smile doesn’t mean it’s not there.” For now, they wait for the next hiccup. And with it, the miracle smile that continues to change everything.

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