Surgery a success for Minn. boy who could not smile
The little Detroit Lakes boy whose doctor said he would never, ever have the ability to smile is now cracking some pretty great little grins, thanks to his "smile surgery."
"See how it curls up?," said his mom, Nikki Larsen, pointing to the right side of Ryan's face. "That's him smiling."
Ryan Larsen, 5, was born with Moebius Syndrome, which essentially means he was missing the two nerves in his head that make it possible for people to smile and blink. He went through four solid years of never smiling, even when he was happy on the inside.
"You'd hear him laugh, he just couldn't smile," said Nikki.
Ryan is half way through a double-dose 10-hour procedure through St. Louis Children's Hospital that first gave him the ability to smile on the right side, and in April will do the same for the left side.
Doctors took part of Ryan's gracilis muscle in his upper thigh and transplanted it, with the blood source (the nerve artery) into his cheek.
"And then they connected the nerve into the chewing nerve," explained his dad, James Larson, who said Ryan then had to practice chewing and chomping to get it all fired up and working. "They told us it would be 8 to 12 weeks before we'd know whether or not it worked," he added.
In order to give it the best chance possible, Ryan couldn't get the cheek very cold, bump it or sleep on it, which wasn't easy for an active 5-year-old boy who also has a 3-year-old brother, but the Larsens worked to protect that cheek as best they could, knowing it was Ryan's only real chance at ever being able to smile.
"We'd take turns sleeping to make sure he wasn't rolling over onto his cheek," said Nikki, who says week after week went by without them noticing anything, until they went for Ryan's three-month check up.
"We didn't think it was moving, but when the therapist had him bite down and hold it, the muscle moved," said James. "And we were like, 'What? That's great," added Nikki. "They confirmed that it had worked, so we were really happy."
The Larsens say Ryan had a droop on that right side going into it, so they just hadn't noticed that it was working until they looked back on photos.
That slightest of smiles is now turning into bigger and bigger ones as the muscle strengthens.
"Ryan has said to me though, that 'I want my smile to be like yours on that side, too,' and I think it will be a lot more noticeable once he gets the other side done," said Nikki, who says that is April 19 in St. Louis.
Right now Ryan still has to be prompted to smile — it doesn't naturally come when he's happy yet — but experts tell the Larsens that will come with time.
Nikki says the surgeries are also helping with Ryan's speech, which has been hampered by not having those nerves. But Ryan's parents say he's been a trooper throughout all of this, learning the ins and outs of the medical world, not complaining and adapting well in school.
"I have Mrs. Hedstrom," Ryan said of his kindergarten teacher, adding that he "likes music time" best and playing with Legos. He's come a long way from what his expectations were in the beginning.
"Going from no facial expression to this is pretty cool because when he was first diagnosed, the neurologist told us he would never, ever be able to smile," said James. "And he wouldn't be able to do this or that," added Nikki, who said she was not the friendliest physician, "and so to see all of the things he's done and the progress he's made on various things throughout his life, and now to see him smile... it's just like, 'take that, lady!' "
The Larsens say going through all of this with Ryan, they've learned how to be advocates for their health care.
"I'm a lot more assertive with this stuff," said Nikki. "I've learned that if it doesn't seem right, go and see somebody else. You have to — nobody else is going to do it, they're just going to push you to do what their doctor says, and it might not be right. You have to go with what you think is best for you and your kid in the long run."
The Larsens have made some strong connections along the way as well, forming a Moebius group in Minnesota that meets once a year and finds support within each other. For as much as Moebius has put the Larsen family through, they know with varying degrees of severity, it is much worse for others.
"Ryan has a pretty mild form," said Nikki, "so, we know we're lucky... it's just pretty cool to see him smile."