Doctors told expectant mother her hearing loss was ‘tinnitus’ – but it was symptom of deadly brain tumour

A mother heavily pregnant with her fourth child had her symptoms dismissed as tinnitus after complaining of hearing loss, balance issues and numbness in her face.

But after seeking a second opinion, she was diagnosed with a brain tumour.

Now in recovery, she hopes to raise awareness of the subtle signs which can easily be missed. 

Stephanie Hilliard, 50, from Somerset, knew something was wrong when she began to lose her hearing in 2012.

She visited the doctor twice, once with water in her ear and a second time after hearing a ringing sound.

Doctors told her she had tinnitus – a chronic and incurable condition affecting around 13 per cent of adults where sufferers experience buzzing, hissing, or roaring, often linked to hearing loss, loud noise exposure or earwax buildup. 

But as her condition worsened, she began experiencing pins and needles down one side of her face, along with a water-like sensation in her head. 

Around the same time, Ms Hilliard, who was working as a carer, found out that she was pregnant with her daughter, Lilly, in 2013.

She was sent for a hearing test by her doctor and was referred for an MRI scan.

‘By then I was heavily pregnant, so they had to make sure it was safe for me to have the scan,’ she said.

‘I had the MRI and went home. I didn’t hear anything for six weeks and assumed no news was good news, so I carried on as normal. But I was wrong.

‘One day I was walking upstairs, lost my balance, and fell. Being heavily pregnant, I was terrified for my baby. I went to hospital for an ultrasound scan and thankfully Lilly was fine, but I still didn’t know what was wrong with me.

‘Then one day, while I was out having a coffee with a friend, I received a call from the hospital. 

‘They told me I had swelling on the brain – a benign, slow-growing meningioma that they believed I may have had since I was around 18 years old.

‘I felt shocked and angry that it had taken so long to receive my results. My thoughts immediately went to my unborn baby. What did this mean for my pregnancy?’  

According to Macmillan, meningiomas are the most common type of primary brain tumour.

They usually affect people over the age of 35 and are more common in women. 

As a tumour grows, it can press on nearby areas of the brain, which can cause symptoms because it stops that part of the brain from working normally. 

Ms Hilliard was told the tumour would need to be removed but that this surgery came with risks, including possible loss of hearing, sight and mobility and even death.

As well as having a newborn baby on the way, she also had three other children: Reece, who was 18, and Travis and Troy, who were 12 at the time.

‘All I could think was: how do I explain this to my children? I was horrified,’ she said. 

Because Ms Hilliard was in the final trimester of her pregnancy, surgeons advised waiting until Lilly was born before operating. 

‘It was an awful time. I felt constantly anxious and started googling brain tumours and swelling on the brain which was the worst thing I could have done,’ she said.

Her healthy baby girl Lilly was born in July 2013, and in March 2014, Ms Hilliard returned to hospital for surgery. 

‘First, surgeons drilled a hole in my skull, and then we had to wait 24 hours before the main operation,’ she said.  

‘During that surgery, they removed part of the tumour. Due to its location, they were only able to remove about 60 per cent.

‘I was grateful they didn’t risk removing more. I had three children and a newborn I needed to go home to.’

After the surgery, the mother of four had to relearn how to eat, drink and dress. 

‘It wasn’t easy, especially with a baby who depended on me,’ she said.

‘Having children made recovery harder. There are days when you want to stay in bed, but you can’t; your children rely on you.’

In 2017, during a routine MRI scan, Ms Hilliard was told the tumour had started to grow again. 

‘The fear returned immediately,’ she said. 

‘The thought of more surgery and the impact on my children was overwhelming.’

This time, instead of surgery, doctors recommended radiotherapy. 

‘It was hard going, but eventually things settled,’ she said. 

Ms Hilliard is now taking on the 10,000 Steps A Day in February challenge for Brain Tumour Research, something she has done every year for the past four years.

‘It’s my way of supporting vital research. Walking helps me stay focused and positive too,’ she added. 

‘A brain tumour is invisible, and people often forget it’s an unseen disability. 

‘I still have balance issues, the nerves in my face have been affected, and I get tired easily, but I’ve learned to live with it and remind myself that I will get through it. Everyone’s journey is different.

‘I haven’t been able to return to work because of my balance issues, and I am now a full-time carer for my daughter, who has a disability. Life is different, but I keep going – for my children, and for myself.

Letty Greenfield, community fundraising manager at Brain Tumour Research, said: ‘Stephanie’s story highlights just how devastating a brain tumour diagnosis can be, not only for the individual, but for their entire family.

‘Supporters like Stephanie are crucial in helping us fund research to find kinder treatments and better outcomes for all those affected by this disease, and getting us closer to the day when a cure is found.’