Parents Kaitlyn and Tim waited months for a diagnosis as the mass continued to grow
A baby was left with a “turtle shell” growth on his back due to a rare skin condition – and nicknamed a “little ninja-turtle” by his parents. James McCallum, 19 months, was born with a large mass covering most of his back – leaving both his parents and doctors baffled.
His mum, Kaitlyn, 35, claims ultrasounds did not reveal anything before she gave birth to the tot on August 19th 2021, 6lbs 14oz, at Morton Plant Hospital in Clearwater, Florida, US. The new mum was “concerned” when she noticed scabbing and lumps on what she thought was a birthmark.
Kaitlyn and her husband, Tim, 41, a medical staffing recruiter, waited months for a diagnosis as the mass grew into what looked like a large mole that covered most of James’ back. After two months and undergoing multiple consultations, little James was diagnosed with giant congenital melanocytic nevus – benign, tumour-like malformations resulting from faulty development of pigment cell.
James’ parents were reassured the growth could be removed in a series of operations. James underwent two rounds of surgery in February 2022 and May 2022 to remove the bulk of the nevus – which finally allowed him to lie on his back.
He then had tissue expansion to replace the nevus with healthy skin from the remaining skin on his back. Thankfully, the procedure was a success and Kaitlyn and Tim hope James will only have to undergo one final round to remove the nevus in its entirety.
Kaitlyn says James now has more mobility and “certainly” seems more comfortable now that he’s able to lie on his back. Kaitlyn, an inventory worker for a boat company, from Tampa, Florida, US, said:
“Before it was removed it had grown rapidly and had become like a turtle shell on his back. It 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.
“When he was born, my mum, Mary, 65, 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 covered 75 per cent of his back at the start and it had started to get fattier and more lumpy – it seemed like it was growing.
“When he was two months old a paediatric dermatologist was able to tell us what it was and then began the process of having it removed. He’s so much happier and more comfortable and we’ll just be happy to get all of it gone by the summer.”
Before having the first removal surgery in February 2022, James had to have an MRI to assess whether the mass was growing internally too. Kaitlyn said: “He had to have an
MRI of the brain and spine, because one of the sub-conditions is internal growing on the brain or spine.
“So, at two-and-a-half months old he had to go under anaesthesia to have it done. We were fortunate to get the results back that there was nothing happening.”
Kaitlyn and Tim were then keen to have the nevus removed, after it began to affect James’ sleeping arrangements. 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. We were very happy with the results.
“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.”
Following the successful surgery, Kaitlyn and Tim explored the idea of tissue expansion, after worrying the nevus may grow back. They joined a Facebook group dedicated to supporting people globally with the condition and were eventually referred to a specialist.
Kaitlyn and Tim learnt through the group that nevus’ can be very itchy, which explained why James would scratch his back on things. They also discovered that nevi don’t produce sweat glands and with it being on his back they would have to limit James’ outdoor time.
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 are in Florida but we were willing to do anything we needed to do to get rid of it. 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.
“We can now put nurse on our resume. It was wonderfully seamless and convenient.
“James was young enough to not know was going on and he wasn’t that bothered by what was going on. At first, you’re like ‘how on earth can I do this to my own child?’ but as you get used to it you’re like ‘thank God I don’t have to go to Chicago for three months.’
“We started that process in September 2022 and from what they told us they believe they can sort it out by his 2nd birthday in August. The Facebook group is wonderful and they work with the Nevus Outreach Organisation who do brilliant research work.”