Baby James McCallum, at 19 months old, earned the nickname ‘little ninja-turtle’ from his parents. His rare skin condition led to a ‘turtle shell’ growth, covering 75% of his back, leaving both his parents and doctors baffled.
Kaitlyn, 35, recalls that ultrasounds provided no insight before her baby’s birth on August 19th, 2021, at Morton Plant Hospital in Clearwater, Florida, US.
Initially mistaking it for a birthmark, Kaitlyn grew concerned as scabbing and lumps appeared on James’s back. While awaiting a diagnosis with her husband Tim, 41, the mole-like mass expanded to encompass the majority of their baby’s back.
After two months and numerous consultations, doctors diagnosed baby James with giant congenital melanocytic nevus—a benign, tumor-like malformation caused by the abnormal development of pigment cells.
In response to the diagnosis, James’ parents learned that the growth could be eliminated through a series of surgical procedures. Consequently, he underwent two rounds of surgery in February and May 2022.
After the surgeries, most of the nevus was removed, enabling James to comfortably lie on his back. Tissue expansion followed, replacing the nevus with healthy skin from the remaining back skin.
Fortunately, the procedure was a success, and Kaitlyn and Tim are optimistic that one more round of surgery will eliminate the nevus.
Kaitlyn observes that baby James now enjoys increased mobility and appears noticeably more at ease, especially since he can lie on his back.
She said: “When he was born, my mum, Mary, and Tim both noticed something on his back. It looked kind of like a birthmark but scabbed over in parts – it was a little concerning as it looked like something was wrong. The doctors didn’t really know what it was at that point. It had started to get fattier and more lumpy – it seemed like it was growing. When he was two months old a pediatric dermatologist was able to tell us what it was and then began the process of having it removed.”
Before his initial surgery in February 2022, James underwent an MRI to determine if the mass was internally growing on his brain or spine.
Kaitlyn said: “At two-and-a-half months old he had to go under anaesthesia to have it (MRI) done. We were fortunate to get the results back that there was nothing happening.”
Kaitlyn and Tim were eager to have the nevus removed as it started impacting James’ sleep.
She said: “We had to speak to a plastic surgeon for removal as it comes with an increased risk of melanoma. They started the process of removal and over the course of a couple of months we did two different surgeries to remove the bulk of it. It had got to the point that we had to sleep him on his side as he couldn’t put his head down flat because it was so bulky. He was able to lay his head down flat, and he seemed a lot more comfortable. They did tests of the removed skin and they came back negative for diseases, which was great.”
After the successful surgery, Kaitlyn and Tim considered tissue expansion, fearing the nevus might return.
Tissue expansion, as per the NHS, is a method that prompts the body to generate additional skin by stretching the surrounding tissue.
Kaitlyn and Tim became members of a Facebook group that provides global support for individuals with the condition, seeking information on tissue expansion. Their quest led them to a specialist recommended by the community.
They discovered that nevi can cause intense itching, shedding light on why baby James often scratched his back on various surfaces. They also found that the nevi on James’ back lacked sweat glands, necessitating restrictions on his outdoor activities.
Kaitlyn said: “They seem like little trivial things but they were big things to us. Through that group we were able to be referred to a doctor in Chicago. We did a virtual consultation to see what we were dealing with and then we set up with him to start tissue expansion. You can do the expansion process from home. 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.”
The couple humorously remarked that they can now add ‘nursing’ to their resumes. The mother said: “James was young enough to not know was going on and he wasn’t that bothered by what was going on. We started that process in September 2022 and from what they told us they believe they can sort it out by his second birthday in August. The Facebook group is wonderful and they work with the Nevus Outreach Organisation who do brilliant research work.”
James completed the initial tissue expansion phase, and he is scheduled to return to Chicago in April for the placement and expansion of the final expanders during the summer.
Kaitlyn explained, “The doctor told us once it’s removed, it’s gone. He’s just going to have scars that will be minimal. He’s so much happier and more comfortable and we’ll just be happy to get all of it gone by the summer. This condition a lot of the time occurs on the face and we felt fortunate that he only had it on his back. Having this removed will give him the best quality of life. He’ll be able to tell a cool story about it and say it’s a shark bite or something. We will definitely take the scaring over having to deal with this any day.”
We are sure that baby James is a warrior and he will have a bright future ahead! Share your thoughts with us!