No hope? I was told to plan my baby’s funeral
I was told to plan my baby’s funeral
My boyfriend Jack Hay, then 20, had gone as white as a sheet. ‘What did you say?’ he asked. ‘I’m pregnant,’ I repeated. It was January 2018, and his eyes were like saucers as he took in the news.
After all, we’d only been together a few months.
My heart thumped as I waited for his reaction.
‘Wow, that’s amazing!’ he said eventually, hugging me. I was so relieved. Over the next few months, we found a flat together.
And as my belly grew,
I felt like this baby was meant to be.
At our 20-week scan, we found out we were having a girl, and decorated the spare room grey and pink.
Stocked it with nappies and sleepsuits.
When I finally went into labour a week overdue, Jack took me to hospital.
In the delivery suite, I pushed and pushed – but, hours later, my baby still wasn’t out.
Forceps failed, and it became clear my baby was in distress.
‘You need an emergency caesarean,’ medics said.
Jack and my mum Tracy, then 42, stayed with me.
Despite the pain, I couldn’t wait to finally hold my little girl.
But then she was born, and the room was silent. No crying, nothing. The nurses ran past me, holding my baby.
‘What’s happening?’ I sobbed.
‘She just needs a little help,’ the doctor soothed.
I was beside myself as I was stitched up and taken to recover on the ward.
Some agonising hours later, I was wheeled down to the Special Care Baby Unit.
My little one’s delicate body was dwarfed by all the tubes and wires helping her breathe and feed.
I longed to hold her, but she was too poorly.
All I could do was touch her tiny hand.
My heart broke. ‘Let’s call her Thea,’ me and Jack agreed.
Later, Thea was transferred for special treatment.
Jack went with her, and I followed by ambulance a few hours later.
‘Will she be OK?’ I sobbed to Jack.
‘I hope so,’ he said.
The next day, doctors came to see us.
Thea had been deprived of oxygen during birth, causing brain damage.
It was called hypoxic ischemic encephalopathy (HIE).
‘Only time will tell how significant the damage is,’ the specialist said.
Over the next few days, Thea was closely monitored.
Jack and I barely left her side.
‘Come on, little one,’ I urged.
Every day, we were given warnings about her health, and every day we tried to stay positive.
‘She’s a fighter,’ I said as Thea’s fingers curled tightly round mine.
Then, on day five, I was finally allowed a cuddle.
My arms shook as Thea was lowered into them.
The love flooded through me.
‘We’re going to be all right, aren’t we?’ I whispered.
Over the next two days, all we could do was hope.
Then an MRI showed catastrophic results.
‘The damage has affected her whole brain,’ the specialist explained.
‘We don’t think she’s going to make it.’
We were advised to start saying our goodbyes, planning her funeral. But I couldn’t accept it. My little girl simply couldn’t die…
I longed to hold her, but she was too poorly
Heart shattering, I looked at Jack, then back down at Thea. ‘We can’t think about her funeral, can we?’ I wept. ‘No way,’ he said. That’d mean giving up on our girl, and we weren’t ready to do that.
Instead, over the next week, we both searched for signs of improvement.
First, Thea started breathing on her own, then she started feeding. Just small sips of milk. But it’s something!
And even though the doctors’ warnings rang in my ears, I stayed positive.
‘Maybe she can do it,’ I told Jack.
‘I know she can,’ he said. As if our pure, stubborn willpower could keep our daughter alive.
Finally, when Thea was 2 weeks old, there was good news.
She could be discharged from Intensive Care.
Back in hospital, she got stronger every day.
Until, at 3 weeks old, we got the news we’d been waiting for.
‘Thea can go home,’ the doctor smiled.
Tears streamed down my face.
My girl’s survived!
‘I knew she’d make it,’ I sobbed to Jack.
Back home, we joyfully showed Thea her nursery.
We still had to give it time, to see how much long-term brain damage she’d suffered.
And then she started throwing up.
‘I think it’s reflux,’ the health visitor suggested.
It’s common, if exhausting, and usually clears up on its own.
But at 5 months, Thea started having seizures.
Her eyes would flicker and her arms would start twitching.
After tests, she was diagnosed with infantile spasms,
and needed medication.
And she was later also diagnosed with dystonia, a movement disorder causing muscle spasms.
She had frequent seizures. But despite all the setbacks, Thea kept proving everyone wrong. Every milestone she reached was more special, because it was one we never thought she’d see. Her first giggle at 5 months.
Her first word – ‘hiya!’ – at 6 months, sitting up at 8 months, standing with a frame at 2 years old.
Although Thea, now almost 3, will always be behind other children her age, she amazes us every day.
‘Dada,’ she babbles at Jack, bursting into giggles.
She’s a happy, bubbly girl, and looking at her, I can hardly believe we were told to plan her funeral.
Now, we’re out of the woods but we are expecting a cerebral-palsy diagnosis.
But we’ve also found a program in Los Angeles where she can have intensive daily treatment to help her develop and reach her next milestones quickly.
We’re fundraising to get her there, and need around £25,000.
We’re determined to give Thea every chance.
After all, she’s fought to get this far – who knows where she can get to next?
For more info, visit Thea the Smiling Warrior at justgiving.com/campaign/theathesmilingwarrior