‘LITTLE NINJA'
We thought our little boy just had a birthmark – he ended up growing a ‘turtle shell’
A BABY whose rare condition made it look like he had a shell on his back was nicknamed "little ninja turtle" by his parents.
One-year-old James McCallum, from Tampa, Florida, was born with a birth mark that turned into a large mass covering most of his back.
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Ultrasounds at the Morton Plant Hospital in Clearwater where he was born in August 2021 did not reveal anything, his mother Kaitlyn, 35, said.
But she started becoming concerned when the skin began scabbing and lumps appeared.
She and her husband Tim, 41, a medical staffing recruiter, waited two months for a diagnosis as the mass continued to grow across James’ entire back.
It was found to be a giant congenital melanocytic nevus, a benign, tumour-like growth caused by pigment cells developing incorrectly.
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Kaitlyn 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.
"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.
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"He's so much happier and more comfortable and we'll just be happy to get all of it gone by the summer."
Giant congenital melanocytic nevus is an incredibly rare birth condition that affects around one in every 20,000 new-borns.
The growths can range in appearance and usually start small before growing as large as 40cm (15.8in) across.
They can cause another condition called neurocutaneous melanosis, which causes skin pigment producing cells in the tissue around the brain and spinal cord.
These can increase pressure on the brain, resulting in headaches, vomiting, irritability, seizures, movement problems or even tumours.
James underwent two rounds of surgery in February and May 2022 to remove the bulk of his growth, which allowed him to lie on his back.
He then had tissue expansion to replace it with healthy skin from the remaining skin on his back.
Thankfully, the procedures were a success and Kaitlyn and Tim hope James will only have to undergo one final round to remove the nevus in its entirety.
Before having the first removal surgery, 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."
'Having this removed will give him the best quality of life'
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.
"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 second birthday in August.
"The Facebook group is wonderful and they work with the Nevus Outreach Organisation who do brilliant research work."
The first round of tissue expansion was a success and James will head back to Chicago this month to have the last expanders placed and expanded throughout the summer.
Kaitlyn said: "The doctor told us once it's removed, it's gone. He's just going to have scars that will be minimal.
"This condition a lot of the time occurs on the face and we felt fortunate that he only had it on his back.
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"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."
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