Peering at her four-month-old daughter Lilly, Aussie mum Raewyn Billings noticed a dark spot on her baby’s cheek.
Her gut dropped as she rushed her little girl to hospital.
WATCH THE VIDEO ABOVE: Lilly lives with life-threatening facial deformation.
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The single mum was told the mark was “just bruising” – but her instincts told her otherwise.
What seemed like an eternal six months later, her “miracle” baby girl was diagnosed with a rare, life-altering condition.
Raewyn had always wanted to be a mum, so as her forties approached, she knew she needed to act quickly.
“I realised time was running out, so I made the decision to have her by myself,” Raewyn, now 44, tells 7Life.
She had a long history of endometriosis – having endured nine surgeries – and feared she would never be able to have kids.
But at 39, the NSW Hunter Region local started IVF and, after three gruelling rounds over a year, she fell pregnant.
In May 2018, her “total miracle” Lilly arrived.
When Lilly was only four months old, Raewyn noticed a big bruise on her cheek under her eye.
“It was really swollen and hard,” Raewyn explains.
“It just came from nowhere.”
The new mum took Lilly to hospital, where nurses “just thought it was bruising” and didn’t suspect any other issue.
Raewyn took Lilly home, where the bruising “minimised”.
But a couple of weeks later, it became worse, and this time Raewyn was determined to find answers.
After a hospital ultrasound, mum and daughter were referred to a specialist – then to a second, then to a third.
“None of them was 100 per cent sure what it was,” Raewyn says.
“They kept saying they thought it was haematomas, or they’d said, ‘Oh, it’s just bruising, it’ll go away’.
“I just kept chasing and chasing.”
Then Lilly’s face began to droop, near to her eye.
“I was worried she had some sort of nerve damage or was there going to be problems with her speech or face,” Raewyn recalls.
“I was kind of thinking the worse for everything because no one could tell us precisely what it was.
“It was extremely worrying.”
For six months, they attended private and public medical appointments.
After several scans, Raewyn finally found answers – from a paediatric surgeon who had seen the condition before.
“He had actually dealt with quite a few children over the years with Lilly’s condition,” Raewyn says.
“As soon as he looked at the MRI, he knew what it was straight away.”
At 10 months old, Lilly was diagnosed with lymphatic malformation – a clump of abnormal lymph vessels that form a growing, disorganised, spongy cluster of cysts.
“Even though you never want this diagnosis for your child, it was a relief,” Raewyn says.
“It is quite rare, so that’s why it wasn’t picked up as easily or as quickly as other things.”
But the journey to treat the condition has been equally perplexing, with no “universal treatment” available.
“It can’t be cured, so she’ll have it for the rest of her life,” Raewyn explains.
“It’s more just they try a lot of things to see what’s going to happen.”
After she was diagnosed, Lilly underwent sclerotherapy.
That’s where a toxic agent is injected into each of the cysts to elicit an immune response, killing the tissue and causing scar tissue to form on the cyst so it can’t fill up again.
But none of the three rounds, which required separate surgeries, worked.
And the placement of Lilly’s cysts means doctors can’t operate to remove them – or Lilly could suffer paralysis.
“Most of her cysts are called micro cysts which are a lot harder to treat than the macro cysts,” Raewyn explains.
“She’s still too young for them to go in and operate to remove everything.
“Her facial nerves are involved as well so there’s a risk of paralysis if they go in to surgically remove them.”
The now four-year-old, who Raewyn describes as “the class clown”, has suffered “numerous bouts of cellulitis” and has had six surgeries since she was 12 months old.
The malformation is on her cheek, inside her mouth and near her eye, and she has a number of cysts on the roof of her mouth and on her lip.
“Once every couple of weeks she’ll have a small flare up where her face will swell,” Raewyn says, adding that doctors don’t know what causes the flare-ups.
“She’ll get pain, she’ll have bleeding from her nose, or pus and blood coming out of her eye, which is from the sinuses.”
Past 12 months
In the past 12 months alone, Lilly has been hospitalised on five separate occasions, including three times for cellulitis.
“That’s been either five or seven days in hospital on IV antibiotics – quite strong antibiotics to stop the cellulitis,” Raewyn explains.
“There’s a risk that, because of the location of the cellulitis, it can go to the brain, so they’ve got to try and get onto that straight away.”
In September, one of Lilly’s cysts began to bleed into her eye socket and she required emergency surgery – or she would lose her eye.
“There was so much bleeding in the eye socket, the cyst moved under the eye and pushed her eye up,” Raewyn explains.
“You couldn’t see any of her eye, you could just see the tissue.”
Raewyn took her to John Hunter Hospital in Newcastle where she was told that, because of the severity of Lilly’s condition, she would need to go to The Children’s Hospital at Westmead for emergency surgery.
But patient transport would take “too long” to arrange and Raewyn was advised to drive Lilly to Sydney herself.
“They wanted her down there as soon as possible because they were really concerned as to how bad her eye was,” she says.
“It was super stressful because I did not know where I was going.”
As Raewyn successfully navigated her way down the coast, her spirits were lifted by Lilly’s positive demeanour.
“I was pretty upset and nervous, and I was crying, but I didn’t realise she knew,” Raewyn says.
“She was like, ‘What’s wrong Mummy?’ and I said, ‘Oh nothing darling’, and she said, ‘I’ll be all right mummy, don’t worry about me’.
“I’m thinking, ‘Oh my God, this is a four-year-old telling me that she’ll be all right ’.
“She’s an amazing kid.”
When they arrived at Westmead, surgeons were waiting to operate.
“They had to drain all the blood from her eye socket,” the mum explains.
“They moved the cyst, they didn’t cut it out, because there was a risk that there would be more bleeding back into the eye socket.”
The surgery was successful.
What Raewyn wants you to know
Due to the nature of Lilly’s condition, Raewyn has noticed people staring at her little girl.
“Staring’s not nice,” she says.
“As Lilly gets older she’s noticing that now too.”
When Raewyn was out one day with her daughter, an older woman approached them and asked a startling question.
“I had an old lady once come and say, ‘Oh what’s wrong with her face?’,” Raewyn says.
“It’s like, my child’s standing here – it’s rude.”
She has a message for others: “Don’t ask horrible questions, just treat people who have a facial difference the same that you would anyone else.”
It’s led the mum to worry that Lilly will one day experience bullying, although she remains optimistic her little fighter will not be easily discouraged.
“I want to teach her that it doesn’t matter what people say to you,” she says.
“She’s awesome, she’s beautiful, and if someone’s like that to you, you don’t need to be friends with them.
“But she’s pretty tough and is a strong little kid so I don’t think she’ll take anything from anyone to be honest.”
Raewyn also wants other parents to know one important thing – they should advocate for their children.
“If people have issues with their children and they aren’t 100 per cent happy with the answers that they’ve got, they need to keep fighting,” she says.
Raewyn is hoping to find new treatments and is waiting to be seen by a private specialist at Westmead.
Having already spent $5000 in medical costs and extras in just the past year alone, Raewyn set up a GoFundMe to help with the next steps of Lilly’s treatment.
“I want to ensure I can keep Lilly in the best care and not have to stress about medical bills and the debt I have from the past year’s medical bills,” she wrote on the GoFundMe.
“She’s so tough and brave and strong, and is always so happy.
“She’s just the light of our family.”
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