How could they troll my girl?
nothing could have prepared amber Thibault, 28, for the moment she first saw her longed-for little girl
It was my favourite topic of conversation. I’d happily natter about it for hours.
‘I wonder if she’ll have your blue eyes,’ I mused to my partner Ray, 28.
It was January 2018 and, that day at my 22-week scan, I’d discovered I was having a girl.
A sister for our gorgeous 13-month-old son Sawyer.
I loved to imagine what she’d look like when she arrived.
‘If she’s lucky, she’ll have your hair,’ Ray replied, stroking my blonde locks tenderly.
In truth, it didn’t really matter whether our girl had my hair or Ray’s eyes.
As long as she was healthy. That was all that mattered.
Still, knowing I was having a daughter ramped up the excitement. I couldn’t resist picking up a cute dress or sleep suit when I went shopping.
‘She’ll have more clothes than you!’ Ray teased.
Together we decided on the name Halle.
Then, at 36 weeks, in May this year, I was scheduled for a Caesarean after developing placenta previa.
It meant the placenta was completely covering the cervix, preventing a natural birth. I wasn’t too worried – it’d happened with Sawyer, too. As I was prepped for theatre, I shivered with excitement. I couldn’t wait to meet my precious baby girl.
Just 15 minutes later, Halle’s cries filled the air. She was finally here!
But the nurse didn’t place her on my chest, like they’d done with Sawyer.
Instead, Halle was bundled in a blanket and whisked away.
I hadn’t even caught a glimpse of her.
‘What’s wrong?’ I asked. But no-one could give me a straight answer.
‘We just need to do some tests,’ a doctor said.
I was stitched up and taken to a ward to recover.
As I lay in the hospital bed, watching Ray pace around anxiously, I couldn’t shake the feeling of dread in the pit of my stomach.
After an hour, a doctor finally arrived with some news.
‘We believe your daughter has Pfeiffer syndrome,’ he said.
He told us Halle’s skull had fused prematurely, but there wasn’t much more he could say.
Frantic, I grabbed my phone and began Googling Pfeiffer syndrome from my hospital bed.
I had no idea what to expect, and we still hadn’t been allowed to see our baby.
Horror mounted, as I discovered the condition, which affects one in 100,000 babies in the UK, caused bulging, wide-set eyes, a high forehead and a sunken face.
‘What will our daughter look like?’ I sobbed to Ray. All the nurses could tell me was that Halle had low-set ears.
But the pictures on Google showed the condition caused severe facial deformities.
I felt sick with terror.
I tried to prepare myself but, when I first saw Halle in the Neonatal Intensive Care Unit later that day, I gasped. ‘Is that our baby?’ I asked Ray. Halle’s head was swollen and misshapen and her eyes bulged out of her face.
It hit me like a sledgehammer. Unable to hold her, I stuck my finger through one of the holes in the incubator, softly stroking Halle’s tiny fingers.
But I didn’t get the same rush of love I’d felt with my son – just a crippling sense of guilt.
Why hadn’t I been able to keep my baby safe inside me?
Later, back on the ward, I told Ray how I felt. I hadn’t wanted to admit I was devastated in front of the nurses.
I was terrified they’d think I was a bad mum.
‘It’s not your fault,’ Ray said. But I couldn’t stop my tears. I felt as if I was grieving for the healthy baby I’d thought I was having.
Days later, Halle was allowed home, while we waited for an appointment at a specialist hospital better equipped to treat her condition.
Sawyer was over the moon with his new baby sister, but Ray and I were worried.
Living in Redding, California, medical bills wouldn’t be cheap and we didn’t have a lot put by. ‘We’ll manage,’ he promised. But we still had no idea of Halle’s prognosis, and I could
feel myself pushing her away. It’s not worth getting
attached, I’d tell myself.
I’d read Pfeiffer children might not live long.
Then, at 3-weeks-old, Halle was confirmed as type-one Pfeiffer syndrome.
It meant that, with the right care, she should have a normal life expectancy.
I was so relieved, until I was told she’d need an operation to remove most of her skull. ‘What?’ I asked, panicked. But her consultant assured me it would grow back.
‘It will give her brain the space it needs to develop properly,’ he said.
Thankfully, the two-hour surgery went well, and Halle was back home two days later.
Her surgeon had left a tiny piece of skull in her forehead, and a bit of bone at the back of her head, too, so she had some protection when lying down.
Halle had to sleep upright in a walker most of the time to protect her head and I had to teach Sawyer, 20 months, to be extra gentle with her.
Especially when he tried to push her bulging eyes back into their sockets!
Being unable to pick up Halle much meant cuddles were out of the question, and I was still struggling to bond.
‘She doesn’t feel like my baby,’ I tearfully admitted to Ray one night.
We weren’t even allowed to take her out for walks in the pram, because she was still too susceptible to infection.
And, although I hated myself for it, deep down I was glad.
I was still struggling to come to terms with Halle’s appearance and I was terrified that people would stare or make cruel comments.
So, when we did venture out, for hospital appointments, I’d always make sure I hid Halle under a hat or a scarf, to cover her misshapen head.
Then, in September this year, Halle’s head began to swell again, and she was rushed to hospital to have a shunt fitted in her brain.
As I anxiously paced the waiting room, I suddenly realised I was terrified of losing her.
It had been a difficult road up until now, but the thought of walking out of the hospital without Halle in my arms broke my heart.
‘Mummy loves you,’ I told her, as we finally took her home.
But back at home, with the shunt fitted, Halle started to develop a cheeky little personality.
I realised now, the poor love had been in too much pain before to do anything
but eat and sleep. Now, when I picked her up, I felt the love flow. And pride, too.
This baby, my beautiful girl, was a fighter. And it was time I shouted about her to the world.
So I dressed her in those cute dresses I’d bought, uploading pictures of her to social media.
We got the odd cruel troll. She shouldn’t have been
allowed to live, one said. But most were so positive.
Gorgeous girl! they wrote. She’s always giggling away with Sawyer, and loves it when we sing nursery rhymes to her.
Halle can expect to live a normal life, though she may not be able to talk and will have developmental delays.
Soon, my brave girl will have surgery to reconstruct her forehead and she’ll have more ops as she gets older.
For now, my Halle is smiling. And so am I – with pride.