2 days ago
My baby's bruise was dismissed as a birthmark only for a tumour to engulf her face – I want to warn all parents
AT first, doctors dismissed the growing mark on Natalie Brooks' newborn baby Brontë's ear as nothing more than a birthmark.
What began in November 2024 as a flat, pale blemish about an inch wide soon started to protrude, eventually pushing the little girl's ear out by two to three inches and engulfing her tiny face.
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The mum-of-three said she "knew something was wrong" as her daughter cried non-stop and refused to feed, but was reassured by doctors it was nothing to worry about.
'We would never have expected it to turn out like this," the 29-year-old from Accrington, Lancashire, said.
"It literally just looked like a little bruise next to her ear.'
Brontë, now eight months old, was eventually diagnosed with kaposiform hemangioendothelioma (KHE) – a rare, aggressive vascular tumour.
The baby girl spent six weeks in hospital and has since developed Kasabach-Merritt phenomenon (KMP), a life-threatening condition that stops her blood from clotting.
'This tumour is benign, it's not cancerous, but she still might need chemotherapy," Natalie added.
"It can be life-threatening if it's not managed.'
She first noticed the blemish when Brontë was just two weeks old.
'From about two weeks of age it appeared and it was just a little bruise and as the weeks went on, we noticed that it never actually went,' she said.
'It was flat and very light in colour. Slowly over the months it started to get slightly bigger.
'We went to the doctors and they just confirmed it was a birthmark so we came away and carried on.'
But by January, the lump was darker, hotter, and growing fast.
'It started to get darker and started to protrude out and get quite big,' said Natalie.
'Since the day she was born she was hysterical nearly every day. There was nothing we could do to calm her down.
"I know every baby cries but this was just relentless. She wouldn't stop crying for about three or four hours non-stop.
'She'd refuse her feed and never finish a full bottle. She was awake every hour through the night. She was very restless and I never got a break.
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'I knew something wasn't right but I didn't know what.'
After pushing for tests, Natalie was told Brontë would need an MRI in five weeks.
By May, the mark was growing so quickly that Natalie took Brontë to hospital herself.
There, an MRI was done, and the tumour was finally diagnosed.
'My family were saying I couldn't leave it that long as it was getting so aggressive,' she said.
'It was very hot to touch. It was very purple and looked angry. It was swollen and it was protruding and pushing her ear out.
"It was behind her ear in a full circle.'
Doctors told her the tumour would have been 'excruciatingly painful'.
'[The diagnosis] was shocking. It's flipped our world upside down to be honest. It's crazy because it's super rare.
'You never think becoming a parent of having this in your lifetime.
"You never imagine being in the hospital for a long time and having a poorly baby.'
On medication for life
Brontë was discharged after six weeks, but just ten days later Natalie spotted it growing again.
Tests confirmed her daughter now had KMP and her medication wasn't working.
'They can reverse that with medications but the tumour that she has gives her body really low platelet levels so her blood actually can't clot,' Natalie explained.
'It can now because she's had transfusions… but we were also informed that this tumour will never actually go.
'It's just managed by medication – and they can't tell us how long she will be on it for, it could potentially be for life.'
Natalie has set up a GoFundMe to help support the family as her maternity pay ends soon and she can't return to work in September.
What is KHE?
Kaposiform hemangioendothelioma (KHE) is a very rare tumour that forms from blood vessels, usually in babies and young children.
It's not cancer, but it can still be aggressive, painful, and dangerous.
The tumour typically appears in the skin, deep tissue or muscle and can cause swelling, redness and discomfort.
What causes it?
Doctors don't know exactly why KHE happens. It's not inherited and isn't caused by anything the parents did.
It's believed to be a random overgrowth of abnormal blood vessel cells, often starting shortly after birth.
What are the risks?
Around 70% of cases can lead to a serious complication called Kasabach-Merritt phenomenon (KMP).
This causes a big drop in platelets, meaning the blood can't clot properly — which can be life-threatening if not treated.
How is it treated?
Children with KHE are usually treated with:
Steroids
Drugs like sirolimus to shrink the tumour
Blood transfusions if platelet levels drop
Chemotherapy in some severe cases
In the UK, specialist centres like Great Ormond Street Hospital manage most cases.
How rare is it?
KHE is extremely rare - affecting around 1 in every 100,000 children.
'It takes the stress away as my maternity pay ends in a couple of weeks.
'Trust your instincts'
I was due back at work in September and Brontë was meant to start nursery,' she said.
'Although it can't take the pressure of her illness away, it can take the pressure of the financial struggle.
'Brontë deserves some really nice days out when she's stable so it gives us the chance to do that as well.'
The mum now urges other parents to speak up if something doesn't feel right.
'Trust your instincts. Even if you're wrong and you go to the doctors and it's nothing it doesn't matter," she said.
"You're not going to get told off. Just go and get it checked out as there is no wrong in doing that.
'You have your motherly instincts for a reason and I'm a firm believer that instincts don't lie.'
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