My baby has facial differences but the stares won’t stop her

'I have to be strong for her'
Me and my girl - I'm so proud of her
Me and my girl - I'm so proud of her

The odds were stacked against her from day one, but Rachael’s girl never gave up.

Here, Rachael, 43, tells the story in her own words.

I could feel their eyes on us as I pushed the stroller through the supermarket. People weren’t even trying to be discreet. One woman even nudged her friend so they could both have a good gawp. Just ignore them, I thought, gripping the pram.

Despite the armour I’d built around my heart, it still made me ache inside to see strangers react like this to my girl.I knew Maddie looked different, but if only they could see what an incredible little girl she was, what she has been through and how she’s proved everyone wrong. Perhaps then they’d be smiling and waving at her, like she was at them, instead of acting like she was contagious.

Eventually, we made it to the deli counter where we’re regulars. ‘Hello little Maddie,’ the ladies cooed, coming round to have a chat as my girl lapped up the attention with claps and giggles. You see, it’s not all bad.

Me and my girl - I'm so proud of her
Me and my girl – I’m so proud of her (Credit: Supplied)

Everyone who knows our journey understands my Maddie is just a normal little girl with an extraordinary amount of fight. She’s had to be that way, because the odds were stacked against her. ‘It’s our advice to terminate,’ a doctor had said when I was 20-weeks pregnant with Maddie. ‘She has a heart condition, which means she most likely won’t survive.’ Although terrified, I decided to give her a chance. ‘If she takes one breath and can’t go on, that’s her fate,’ I explained to friends. ‘It’s my job as her mum to bring her into the world and the rest is up to her.’ Then, during a scan, I also noticed her head was a slightly strange shape and her eyes seemed far apart. ‘Don’t worry, it’s just her heart we have to focus on,’ said the doctor.

After an excruciating 24-hour labour, which ended in an emergency C-section, I was so relieved when her heart was still beating. Before I even looked at her, my girl was whisked away for tests. After an agonising wait, two days later I was finally wheeled down to NICU to see her for the first time. ‘Her head looks a bit different,’ my mum Colleen, 63, told me cautiously. Wearing a little hat and with chubby legs and soft skin, Maddie looked perfect to me. The tubes and drips snaking in and out of her tiny body were far more horrifying than her slightly dome-shaped head. But then doctors gave me some devastating news.

maddie born with syndrome
Maddie was born with Pfeiffer type syndrome

While Maddie was stable for now, her future was uncertain and they advised me to take her home to die. How different to the joyful return home with my previous three children, Emily-Jane, now 25, Shawn, 22, and Cody, 15. My partner and I had separated, so it was just me and Maddie. ‘This is your journey,’ I whispered to her. ‘You decide and I’ll protect you.’ Her decision was to live.

Weeks later, unrelated to her heart condition, she was diagnosed with an extremely rare condition called Pfeiffer type syndrome with severe craniosynostosis. It meant her skull bones had fused early so, instead of growing around her head, they’d grown upwards. Because of this, doctors were too nervous to operate on her heart. ‘She deserves the same chance as any other baby,’ I raged. But incredibly, Maddie weathered the storm and, much to the doctor’s amazement, reached her first birthday.

Now bigger and stronger, a cardiologist agreed to operate. So, in May 2017, she was ready for an eight-hour operation to improve blood flow in her heart. As I kissed her goodbye, tears started falling for the first time since her birth. ‘Crying is a sign of weakness and I have to be strong for her,’ I sobbed.  Little Maddie pulled through and miraculously was home in eight days! ‘You’re my little fighter,’ I told her as she smiled cheerily through it all.

Maddie after her op

The operation gave her a chance, but now she needs an operation on her head. There’s no space for her brain to grow and without intervention she could end up brain-dead.‘We’re not sure if her heart is strong enough to withstand it,’ doctors have explained – but I’ve heard it all before. Nobody knows my daughter like I do and that’s why I keep fighting for her.

Now two, Maddie’s a bright, happy little girl who loves music and sparkles, drawing and riding her bike. Tutus and a pink monkey are her favourite things. She is a little delayed with speech and movement, but she’ll get there. We just need to give her the chance. ‘I don’t know how you do it,’ friends tell me in awe. You do what you have to do for your child. All her appointments are costly and it can be isolating, but I have also made some amazing friends through organisations like Heart Kids. ‘It’s a different world I live in now,’ I tell people. But for all the hardship, the world I live in with Maddie by my side is also a much richer one.

Read more in this week’s issue of that’s life!

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