Time with our daughter Violet was running out, and there was a memorable moment we needed to share before it was too late. By Emily Taylor, 30
My partner James took my hand as we got ready to have another glimpse of our baby on screen.
We already had two boys, Theo and Logan, and now I was 20 weeks pregnant with their baby sister.
‘How’s she doing?’ James asked.
There was a pause and then the doctor said: ‘Your baby has a potential brain abnormality.’
In an instant, all the excitement we’d felt when entering the room, evaporated.
‘She’ll be OK, won’t she?’ James asked.
‘It’s too early to tell what the effects are, if there are any,’ he said. ‘But they appear to be mild.’
As we left to go home, we clung to that word — mild.
‘It’s probably nothing to worry about,’ I said.
I was closely monitored for the rest of the pregnancy, and at 38 weeks I went into hospital for a planned Caesarean.
When they placed
baby Violet on my chest, I felt a huge wave of love and relief.
‘My precious little girl,’ I said, holding her.
We were kept in for two days while doctors monitored Violet. But despite their fears, she seemed fit and well, so they let us go home to Caerphilly, Gwent.
Her big brothers were instantly besotted with her too, and we began to settle into life as a family of five.
But over the next weeks, Violet ended up back in hospital twice — first with an infected saliva gland and then with bronchiolitis.
Although our little warrior bounced back both times, I began to notice a few things that worried me.
One day, as I played with Violet, I noticed her eyes weren’t following my movements.
Picking up a flashing toy,
I moved it around in front of her, but it made no difference.
Her development seemed delayed compared to her brothers.
‘The boys were both smiling by six weeks,’ I fretted to James when Violet was two months old.
‘Maybe we should get her checked out,’ he agreed.
We took her to the hospital where she underwent genetic testing, but the results were inconclusive.
‘I still think something
isn’t right,’ I said anxiously.
Over the next months, Violet was back and forth to hospital. First with Covid, and then with what the doctors thought were reflux issues.
She was admitted again when her blood-oxygen levels dropped, causing severe episodes of sleep apnoea.
Then, while she was in hospital, Violet caught chickenpox and had to be isolated.
Although it was a wrench to be away from the boys, we needed to be by her side. So they went to stay with our parents while we remained
at the hospital.
'We should give her a cuddle'
But now, as we spoke to the doctor about everything our little fighter had been through in the eight months since she’d been born, it felt like someone was finally listening and trying to join the dots between all the seemingly different issues.
And after further genetic tests, Violet was diagnosed with
a rare neurogenetic disorder called TBCK.
‘There are only
100 cases worldwide.’ the doctor explained. ‘Violet is the first person in Wales ever to be diagnosed with it.’
For a moment, I felt relieved to have a name for what was causing our little girl all these problems.
Now, there’ll surely be
a clear way to treat it,
I thought.
But my relief quickly vanished when James asked: ‘What does it mean for Violet?’
‘Unfortunately, it’s life-limiting,’
the doctor replied. ‘And Violet has a severe form of the condition.’
‘How has this happened?’ I asked, tearfully.
The doctor explained
that both James and I were carriers of the gene mutation that Violet had inherited.
Our parents brought Theo and Logan to visit Violet.
They were still only six
and four, so we didn’t want to scare them, but I sat them down and said: ‘Violet is
very poorly.’
My heart broke as I watched them gently cuddle and fuss over their baby sister.
Over the next weeks, we sat with our little girl, talking to her and holding her hand.
There were more tests while doctors tried to work out what they could do for her.
But in the end, we had to accept her needs were
too complex.
Anything they could try might only keep her alive for a little time, but likely cause her more suffering.
As she couldn’t remain on
a ventilator for much longer, we began talking about things we wanted to do,
like taking footprints and hand casts.
Then James said: ‘Let’s
get married.’
‘Are you serious?’ I replied.
‘Of course,’ he said.
We’d often thought about it, and I knew I couldn’t do it without Violet being there.
So we spoke to the hospital, who threw themselves into planning
a little ceremony and reception for us there.
Days later, we got married at the local register office. Then we headed to the hospital where they’d dressed Violet in a beautiful little white dress and a crown, and decorated her cot with fairy lights and flowers.
As I took her little
hand in mine, I fought back tears.
Then we gathered around her cot and, led by the hospital chaplain, James and I made our vows.
Afterwards family joined
us for a reception, complete with cake.
It meant so much for us
to share that moment with Violet.
But we couldn’t stop time and just days later, doctors told us: ‘There’s nothing more
we can do.’
Violet was moved to a hospice, where she was
taken off the ventilator and machines keeping her alive.
There, we were able
to share a bed with her, snuggling close as we watched TV together.
Out of intensive care, Violet finally began smiling too. But as her condition deteriorated, we knew it was time.
‘I think we should give her a cuddle now,’ I whispered
to James.
He held Violet for about an hour, and then I had a
long cuddle.
Holding her to my chest, I felt her breathing slow, until she took one last breath.
Although my heart was breaking, having her in my arms felt like the gentlest way for her to go.
When we held her funeral soon after, it felt fitting that the hospital chaplain who’d blessed our marriage led the celebration of Violet’s life.
We all placed purple flowers on her coffin.
Afterwards, the grief felt overwhelming, but we carried on for the boys’ sake.
Now, it’s been 10 months since we lost Violet. And while she opened our eyes
to how much pain and suffering is in this world, she also showed us how much kindness exists too.
Her strength and bravery inspired us to fundraise for the charities that have helped us so much.
We share her story and everything we’re doing in her name on our Facebook page, which we’ve called ‘Violet’s Wildflowers’.
And while we miss her immeasurably, we are so grateful for the 11 months
we had with her — and we’ll treasure that time forever.
● To find out more, search ‘Violet’s Wildflowers’ on Facebook.