“One of the sub-conditions is internal growing on the brain or spine,” Kaitlyn explained. “So, at 2½ months old, he had to go under anesthesia to have it done.”

Fortunately, there was no internal growth and his parents started the process to get it removed, with doctors testing the removed skin for diseases after his first surgery and the results coming up negative.

Worried the mass could grow back, Tim and Kaitlyn joined a Facebook group to connect with other people living with the condition, which they say has opened their eyes to other symptoms and side effects — such as itchiness and not producing sweat glands.

After connecting with a specialist in Chicago, James’ parents decided to start tissue expansion in September 2022, which involves growing the “good” skinsurgically.

“You can do the expansion process from home,” Kaitlyn said. “The expanders are placed under the skin by the doctor and then we injected them with saline once a week and it slowly expands the good skin which replaces the nevus.

“He’s so much happier and more comfortable, and we’ll just be happy to get all of it gone by the summer,” she added.

As the McCallum parents searched for answers, struggling with the uncertainty, the growth increased in size, becoming lumpier and fattier. The spots grew darker, the texture became fleshier and the exterior grew hairier.

The growth began to resemble a turtle shell, with Kaitlyn and Tim adopting the nickname of “Teenage Mutant Ninja Turtle” for their toddler.

“We try to give him any superhero nickname, because that’s what he is to us,” Kaitlyn said.

Unfortunately, the shell-like growth also began to hinder James’ life. He couldn’t sleep on his back, which is a safe sleep practice for babies, and his head and neck movement became more and more restricted.

Finally, a pediatric dermatologist in Orlando offered a diagnosis: A giant congenital melanocytic nevus.

It’s a large patch of skin, often described as a mole or a birthmark, which presents at birth or develops in a baby’s first year. It is usually not harmful, though it can develop into cancer or become dangerous if it reaches the brain or spine. Thankfully, in James’ case, it was cumbersome, but harmless.

“Getting that diagnosis of ‘Okay, here is what It is, here’s who you can go to, here’s how we’re going to fix it,’ that was the moment of, ‘Okay, we can do this,’” Kaitlyn said.

Doctors began the removal process when James was six months old, starting with the lump by his neck and then moving down his back to remove the bulk of the shell. Now, they’ve started a series of procedures to remove the bad skin and replace it with good skin. A specialist at the University of Chicago is spearheading that work.

When it’s all over, doctors hope James will be left with nothing more than a scar. His parents know their turtle-shell hero will have a story to tell and they’ll look back on the strength it took for all of them to endure this birth surprise.

“I’ve learned how strong you can be and how much a mother can do for a kid,” Kaitlyn said. “Just keep staying strong. There’s an end to this and we’re almost there.”