I knew my girl needed help when she stopped laughing
Nikita Owen-brown, 32, is so relieved she didn’t ignore her mother’s instinct…
I knew she wasn’t being herself
You know your child better than anyone else – sometimes, even medical professionals.
As a mum, you should always trust your gut. No matter how silly you think it sounds, or how crazy you feel.
Your maternal instinct could save your child’s life.
Just like mine did.
I knew my baby wasn’t well, and nobody listened.
The lengthy journey to her life-changing diagnosis was a battle, and now every single day is a struggle.
But I am so glad that I followed my intuition.
Or my baby girl Soraya, now one, wouldn’t be here today.
On 25 May 2019, our family of five welcomed Soraya into this world.
She struggled to gain weight, but she was a happy, healthy baby when she was born.
‘She’s beautiful!’ her dad, Simon, 29, cried, holding her.
Our children Sean, 11, Sharlee, 10, and Sam, six, were so excited to have a little baby sister.
When she was six months old, I started to notice she was unwell, and took her to the doctors for different things.
She didn’t have an appetite, then she developed a horrible, raspy chest cough.
‘There’s lots going around,’ our GP said.
When her left eye looked swollen, an ophthalmologist ensured us that Soraya’s vision was fine.
Just before Christmas, we spent the night in A&E.
‘It’s a viral infection, give her Calpol and plenty of fluids,’ the doctor told me.
But I knew that Soraya just wasn’t herself.
She stopped laughing. No-longer the giggly, happy baby she used to be.
My mum Jane, 54, and dad Sean, 53, were worried.
On Boxing Day, we were sat in the conservatory playing board games when I noticed discharge leaking out of Soraya’s ear.
‘What’s that?’ I worried. Next day, the GP diagnosed an ear infection and started Soraya on ear drops and antibiotics to clear it up.
By the end of January, Soraya was still coughing, not eating and always sleeping.
She’d developed thrush as a side effect to her antibiotics.
‘I wish I could make it better,’ I cried to Simon.
I expressed my concerns to the health visitor when Soraya suffered with constipation and a stomach bug.
‘I feel like I’m wrong to keep coming back,’ I told every GP.
‘Come as many times as you like,’ they all reassured me.
However, they all kept repeating:
‘She doesn’t appear acutely unwell.’ Am I going crazy? I thought to myself. But I knew I couldn’t be – she’d been ill for 37 consecutive days. Her beautiful little laugh had gone. And I needed to get it back.
One day, we were playing on the floor with toys, when I noticed Soraya’s left arm wasn’t moving.
After begging the paediatrician’s office to see us, we managed to get a lastminute appointment.
‘I can’t lie to you – I am concerned,’ he said, measuring her head circumference.
Soraya’s head was swollen on the left side.
We were sent home with a five-week wait for an urgent neurologist consultation at Sheffield Hospital. What if she doesn’t make it five weeks? I thought. That night, I read through Soraya’s red health book, scouring the internet for possible diagnosis’.
The following day, Soraya still wasn’t feeling well.
‘That’s it, I’m going to ring an ambulance,’ I told Simon. If they can see how poorly she is, they’ll admit her, I thought. It was my last shot. Thankfully, the paramedics took one look at her, and sent her straight to A&E.
She was diagnosed with hydrocephalus – a condition that occurs when fluid builds up in the skull and causes the brain to swell.
Whilst it can be fatal, I was
relieved to finally know.
Then later that day, a consultant pulled me aside for a serious chat.
‘We’ve found a tumour in her brain,’ he said, showing me Soraya’s MRI scan.
‘Are you sure?’ I panicked. ‘Yes,’ he said, explaining. Within 20 minutes, an ambulance had arrived to send Soraya to Sheffield.
We’d only been in A&E for five hours – I couldn’t believe how fast it had escalated.
‘I was right to call the paramedics,’ I sighed to Mum with relief.
They took a biopsy of the tumour, and for two weeks, we waited patiently.
‘Soraya has atypical teratoid rhabdoid (ATRT),’ the neurologist told us.
It is a very rare, cancerous and aggressive tumour.
The fast-growing rate meant that medics couldn’t remove all of the tumour.
Some of the cancer would have to stay.
If we’d caught it sooner, Soraya would have had a much better chance at survival.
On 26 February, Soraya had brain surgery.
The surgeon managed to remove 90% of the tumour – more than we’d expected.
Ever since , Soraya had stayed in Sheffield Hospital.
On 5 March, Soraya started an 18-week course of chemotherapy in hospital.
When lockdown rules were implemented, Sean, Sharlee and Sam had to move in with my parents.
Simon and I have taken it in turns staying with Soraya – only one of us is allowed in at a time in hospital.
Now, Soraya is on heavy medication, she is fed through a tube and has lost almost all of her hair.
‘Her eyelashes are gone,’ I sobbed to Simon.
Even after 15 blood transfusions, Soraya still manages to smile every day.
We sing to The Greatest Showman, and play with sensory toys.
And she loves going up and down the ward in a lights and sounds chair that the physio department gave her.
‘Good girl!’ I smile. On her first birthday, the kids and grandparents were allowed to visit. We threw her a special birthday party in the clinic – and it was truly emotional.
The play workers made her a sensory book, and each page is a member of the family with their name on it. Flicking through the pages, I show her the photos of our family. ‘Sam,’ I say, hoping that she still recognises her siblings.
Her last MRI results were positive, and chemo is going as well as it can.
We are all trying to stay
hopeful – taking each and every day as it comes. On bad days, it’s impossible to not blame myself for everything. Could I have done
more? I question, filled with guilt.
But deep down, I know that I did as much as I could.
Her consultant has since told me: ‘If you didn’t ring for an ambulance, Soraya wouldn’t have made it to that appointment.’
If we’d waited five weeks, I would be grieving over the loss of a baby.
Doctors have apologised to me for her misdiagnosis’.
It just proves that at times, mums really do know best.
Soraya doesn’t have any idea how much she is loved.
She has over 2,000 followers – both strangers and friends – on her Facebook page, called Soraya’s Army.
The staff at Sheffield have become our second family.
I am so grateful for their care and love.
People constantly ask me: ‘How are you so brave?’
But I’m not brave, Soraya is. Whilst she’s still fighting, I’ll be there every step of the way.
My amazing little girl – a warrior princess.
Nikita is raising money for Soraya and other families in the same position. Go to Soraya’s Law on Go Fund Me to help.