“It looked kind of like a birthmark but scabbed over in parts — it was a little concerning, as it looked like something was wrong,” Kaitlyn told South West News Service.When the mark grew — resembling a large mole — his parents took him for tests, waiting months for results.
“The doctors didn’t really know what it was at that point,” Kaitlyn recalled.“It covered 75% of his back at the start, and it had started to get fattier and more lumpy,” she continued. “It seemed like it was growing.”
James’ lump grew rapidly, becoming so cumbersome for the baby that he had to sleep on his side.
“[It] had become like a turtle shell on his back,” she explained. “He couldn’t put his head down flat because it was so bulky.”
James had his first surgery to remove the nevus in February 2022, first having an MRI on his brain and spine to assess whether it was growing internally.
The new parents say James’ quality of life is much better now that the mass has been removed.Courtesy Kaitlyn McCallum / SWNS
“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” skin surgically.
“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.
