Sharna Spears, 26, from Karabar, NSW, shares her story:
The doctor frowned at the monitor then left the room in silence.
My heart started racing.
Something’s really wrong.
I was just 22 weeks pregnant with my first bub, a little girl, and I’d been rushed to Canberra Hospital after going into early labour. I was desperate to delay the birth.
The baby’s dad, my boyfriend Dan, would come when he could, but alone in the room, I was terrified.
Having been diagnosed with endometriosis, I knew how lucky it was that I’d conceived in the first place, but now my little girl was trying to arrive far too soon. Was something else wrong too, though?
Finally, the doctor returned with three others and they talked in hushed tones as they examined the screen. Then, one turned to me.
“Your baby has a tumour the size of an orange at the base of her tailbone,” she explained.
What?!
“We won’t know whether it’s cancerous until she’s born,” she continued.
The tumour was extremely rare and they didn’t know why it had formed.
It was far too early to have my baby now so doctors would delay labour as long as possible to give her a fighting chance.
Afterwards I fell apart. All I wanted was for my baby girl to be healthy, but now everything was uncertain.
Already 5cm dilated, I was put on bed rest.
Dan and my parents arrived soon after and although they were just as worried, they tried to reassure me everything would be okay.
A social worker, Rosie, helped me manage the stress.
On a calendar, we crossed off each day I made it through without giving birth. I had to hold off until at least 34 weeks.
Doctors gave me tablets to help delay it.
Meanwhile, a million questions raced through my mind. How small would my little girl be and what would happen once she was born? Would the tumour mean she had another fight on her hands?
She didn’t deserve so many traumas in her little life.
“Come on, my love,” I whispered to my bump. “Stay in there a bit longer and we’ll get through the rest together.”
After five weeks on bed rest, I went into labour again.
I was 7cm dilated.
My doctor did another scan and found that my baby’s tumour had ballooned to the size of a melon and her little heart was slowing down.
The tumour was heavier than her entire body.
“She needs to come out this afternoon,” she urged.
Because the growth was so big, there was a chance I’d tear if I gave birth naturally, potentially killing us both.
So I was rushed off for an emergency caesarean.
I rubbed my bump one last time as I went under, praying my little girl would make it through.
“Where is she?” I mumbled groggily when I woke up.
“She’s in the NICU,” doctors told me. “She’s alive but in a critical condition.”
There weren’t even any photos of her to show me.
“Please,” I begged, terrified. “I need to see her.”
“You’ve just had major surgery, you need to stay in bed,” the doctor ordered.
Finally, 24 hours after she was born, I saw my daughter for the first time.
Nothing could prepare me for how she looked laying in the humidicrib.
She was so tiny and instead of a bottom, she had a tumour the size of a rockmelon. Doctors couldn’t determine her height or weight until they removed it but I knew she couldn’t be more than a kilo.
I was overcome with love but also terrified that I’d lose the special girl I’d only just gotten to meet.
“You’re being so brave, Aleyathiah,” I encouraged, giving her a name as unique as she was.
A doctor explained they’d need to remove the tumour and see if it was cancerous. But only Westmead Hospital in Sydney had the resources to perform the risky surgery.
“She won’t survive a flight, and it’s unlikely she’ll survive the drive,” the doctor warned.
She’d already made it this far, we couldn’t give up yet.
Aleyathiah after her surgery.
“We have to try,” I decided.
When she was four days old, Aleyathiah was taken to Sydney while I stayed behind.
The drive was so risky that doctors needed as much space as possible to work on her if anything went wrong.
Waiting to hear if she’d made it was agonising. But she had, just as I knew she would.
I was flown up to be with her six hours later.
Clutching her tiny hand as they wheeled her off for the surgery, I realised I may never see her again.
“I love you so much,” I told her tearfully.
Story continues after this video:
After seven agonising hours, the surgeon came out to meet me. She looked exhausted.
“I’ve worked on many kids,” she said, “but this was one of the hairiest operations I’ve ever done. She lost a lot of blood but she survived.”
I breathed a sigh of relief, overjoyed that my girl had won her battle.
Tears pricked my eyes when I finally saw Aleyathiah in her crib.
For the first time in her short life she looked like a normal baby, with a nappy covering her bottom instead of her huge tumour.
Surgeons had reconstructed her bottom and managed to remove 90 per cent of the growth.
I can’t imagine life without my girl.
“It weighed one kilogram – heavier than her entire body,” the doctor explained.
When we found out it was benign and wouldn’t need further surgery, I knew Aleyathiah was finally out of the woods.
Holding her in my arms for the first time when she was three weeks old, I thanked her for putting up such a strong fight.
Dan and my parents were overwhelmed by just how close we’d come to losing her but they fell in love with her as soon as the shock wore off.
Five months later, I got to take her home, by then, sadly, Dan and I had split up.
Aleyathiah’s now seven years old and has three younger siblings, who I’ve had with my husband, Jake.
She still suffers from loss of bowel control and has digestion issues, but she’s a gorgeous, bright little girl.
She loves going to school and, although she still depends on nappies, she has lots of friends.
It’s been a long road but my girl has come so far.
To help out with Aleyathiah’s ongoing medical bills, Sharna has started a GoFundMe page which you can donate to here.
