A mum has revealed her heartbreaking battle after a common sign on her baby turned out to be a tumour that affects only 500 people worldwide.
When Ali Pilossoph noticed a white lump on her newborn’s gums, she simply assumed it was a tooth coming through.
But, within one week, it had doubled in size – and it quickly became clear it wasn’t a tooth at all.
After multiple doctor and dentist visits, it was confirmed to be a cyst that needed to be removed immediately.
Ali, 29, had no choice but to agree, as it turns out little Theo’s cyst was actually a tumour of which there are only 500 known cases worldwide, according to the National Institutes of Health.
“I knew in my heart something was wrong,” the content creator told Need To Know.
“The pit in my stomach was telling me it wasn’t just a tooth.
“Seeing Theo wake up from surgery is something I will never forget.
“There’s truly nothing that can prepare you for watching your baby in that kind of pain – confused and crying in a way I had never heard before.
“It was absolutely heartbreaking.
“I’m grateful he’s so young that he won’t remember it.
“But I know it’s something I will carry for the rest of my life.”
Ali, from Miami, US, spotted the white cyst in January 2026 – just a little over a month after Theo was born.
At first, she claims no doctors or dentists could tell what the lump was and were constantly referred from one place to another without any answers.
After phoning “hundreds” of medics, Ali eventually came across a surgeon an hour away who agreed to remove the cyst in spite of Theo’s age.
But their battle wasn’t over just yet.
She said: “The day of the surgery was already overwhelming before we even knew it was a tumour.
“When we arrived, we were suddenly told the procedure would cost $35,000 because our insurance had denied it.
“We were in complete shock.
“After nearly two hours of arguing with the hospital and insurance, it was eventually covered – but that was only the beginning of an incredibly difficult day.
“Theo got called into surgery and I was told it would take 15 minutes.
“After two hours, we finally got a call to say everything was going well.
“I prayed for my little boy; but then they called back to say it wasn’t a cyst – it was a tumour.
“The surgeon said in his 35 years of practising, he had never seen something like this before – and thought he never would as it’s so rare.
“It was breaking my heart knowing my little boy was suffering.”
Theo was diagnosed with melanotic neuroectodermal tumour of infancy (MNTI).
It’s a rapidly growing benign tumour that affects only those under one-year-old.
As it’s so rare, there’s little-to-no research on what causes it.
Now, even though the tumour has been removed, it’s unclear if it will return.
Luckily, it hasn’t caused any life-threatening issues, though its impact is life-changing.
Ali said: “The doctors had to remove some of his jawbone, baby teeth and potentially permanent teeth.
“We’ll likely have to get some cosmetic work for this as he gets older.
“But the doctor is hopeful his jawbone will grow back, as his gums already are.
“I am worried it might affect his facial symmetry and he’ll have potential speech issues, so we’ll see a specialist doctor if it comes to it.”
Ali hopes to share Theo’s stressful ordeal in a bid to raise awareness for the signs to look out for – especially before it’s too late.
She added: “After everything, I feel like my motherly intuition is heightened.
“Even something small, like him having gas, makes me pause and wonder if it’s something more.
“When I do feel unsure or worried, I don’t sit on it.
“Trust your intuition.
“Don’t wait and hope it’ll get better on its own.
“In our case, everything progressed very quickly.
“Had we waited any longer, the impact could’ve been much more severe.”
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