Medical Collaboration Helps Shriners Children’s Ohio Treat Rare, Complex Craniofacial Cases

Fifteen-year-old MJ may be a little winded after running down the hospital hallway, but he isn’t letting it show. It certainly doesn’t diminish his ear-to-ear smile or exuberant high fives with the Shriners Children’s Ohio staff cheering him on.

Even a short run like this wouldn’t have been possible for MJ just a few months ago.

The teen has Crouzon syndrome, a rare genetic disorder where the skull fuses prematurely and affects the proper growth of the head. The pressure on his brain was causing MJ’s eyes to bulge, impacting his ability to walk and maintain balance, and creating some cognitive challenges.

The family came all the way from Jamaica to Dayton, Ohio, largely because of the medical advancements being made through the hospital-within-a-hospital collaboration between Shriners Children’s Ohio and Dayton Children’s Hospital. This partnership is allowing the physicians to treat some of the most complex craniofacial cases and help children from across the world, many of whom do not have anywhere else to turn.

“We are starting to mesh together. We are two separate hospitals, but it’s just one team,” said Chris Gordon, M.D., a plastic surgeon who works for both hospitals. “We have the ability to use the resources at Dayton Children’s in a way that tremendously leverages what we’ve got at Shriners Children’s Ohio.”

MJ is a perfect example of how the different medical disciplines are working together. He had surgery in January 2024 to release the pressure on his brain, allowing it to function properly and receive adequate blood flow. Additional plastic surgeries followed to address the structural elements of his skull.

“We've figured out a couple of new things on what causes the problems in these kids, and we have a strategy,” Dr. Gordon said. “We are actually talking about going after those earlier on in treatment.”

A big part of the “we” in the equation has been Rob Lober, M.D., a neurosurgeon who works for Dayton Children’s Hospital and with privileges at Shriners Children's. Gordon and Lober began collaborating in 2022 when they performed a complex separation of conjoined twins that garnered national attention. That partnership has now translated to taking on more complex craniofacial conditions like Crouzon, Apert syndrome and others.

“We think that we're on the path to developing techniques to actually address these problems earlier, and really be able to deal with that pathology before it causes those other problems,” Dr. Lober said. “So, I think we're really at the point, given the experience that we're having, where we are going to revolutionize the way these kids are treated.”

Part of that treatment plan includes the multidisciplinary approach that the collaboration between the hospitals allows. MJ has seen a variety of specialists, including speech therapy, physical therapy, ENT, audiology, neurosurgery, ophthalmology, the sleep clinic, dieticians, radiology and more. Moreover, the family has had an extended stay right across the street from both hospitals at the Ronald McDonald House.

“Dayton Children’s, the Ronald McDonald House and Shriners are an amazing team,” said Debby-Ann, MJ’s mom. “When we arrived, the whole team met. There were 10 people or more in the room. I didn’t feel lost anymore. It feels like a family.”

Even just a few months removed from surgery, MJ said he has noticed a difference.

“MJ said, ‘My brain is working better.’ And I said, ‘Well, what do you mean?’” Lober stated. “He said, ‘Well, I used to only be able to think of one thing, and now I can think of many things.’ And that was at the beginning. We actually have seen him become more and more eloquent, articulate. He's a funny guy. We've seen fairly dramatic improvement in his walking. We keep saying that he's going to be Usain Bolt [the 8-time Olympic gold medalist runner from Jamaica] at some point.”

MJ took the first step on that February day when he ran down the hall. For him, the positive outcomes are easy to describe. “I feel stronger,” he said with a laugh after a recent physical therapy session. “If I need to do something, I just get it done.”