Soon after Charlie and Danielle’s son, Maddox, was born, the parents noticed he was having trouble sucking and latching on and that he had no facial movement.
Several days later, the hospital’s geneticist diagnosed Maddox with Moebius syndrome, a rare neurological condition that affects the nerves that control facial movement. Maddox is unable to smile or frown. He can’t blink and has limited tongue movement, which causes him to drool and makes it difficult for him to eat.
“I didn’t know how to really deal with the diagnosis,” Danielle recalls. “I would wake up every day, saying, ‘OK, maybe this is the day that he is going to smile.’ And, you know, obviously, it wasn’t going to happen.”
Maddox had a feeding tube for the first nine months of his life and now uses his finger to help him move food to the back of his mouth so he can swallow. He goes to physical and speech therapy.
“Not having a smile is a huge emotional problem for anyone,” ER physician Dr. Travis Stork says. “But, more importantly, Maddox is dealing with so many health issues because of his facial paralysis that people don’t even think about.”
Plastic surgeon Dr. Andrew Ordon explains that the seventh cranial nerve gives you the ability to smile, and it also controls the ability to close your eyes, eat, suck and blow.
Danielle says she and her husband try to talk with Maddox, who is now 5, about his condition so he can become self-sufficient and one day advocate for himself.
“He knows that even though we have these difficulties, we’ve learned to compensate for everything that he lacks,” she says. “We never say that he can’t smile, because we always smile from our hearts.”
The Doctors send Maddox to pediatric plastic surgeon and craniofacial and reconstructive specialist Dr. Andre Panossian to see what options might be available to help him gain facial movement.
Dr. Panossian says Maddox is a good candidate for facial reanimation, or smile reanimation, surgery. Dr. Panossian explains that he has developed a technique where he disconnects and rotates one of the biting muscles on the side of the head and then extends it to the corner of the lip. It produces tension in the lower lip and the corners of the mouth, which can help coordinate the movement of food in the mouth, as well as help improve articulation and speech. More traditional surgeries use a muscle from the leg.
“I would give everything that I have and everything I’d ever own to be able to see Maddox smile,” Charlie says. “For Maddox, it would mean the world.”
Dr. Panossian surprises the family by offering to donate his services to perform the smile surgery.
Maddox joins his parents and The Doctors onstage.