As parents, our children’s well-being is always our top priority. We trust medical professionals to keep them safe, but what happens when your gut feeling tells you something’s wrong and no one seems to listen? This is our story—my story—of fighting to be heard and using Ryan’s Rule to save my daughter, Georgia.
The Start of a Nightmare
It was the 12th of December. Georgia was two at the time, a bright and energetic little girl despite her complex heart defect. That morning felt like any other. She seemed perfectly well, playing and laughing like she always did. But then I changed her nappy and saw it—blood. My heart sank.
I immediately contacted her cardiology team, and we agreed to watch and wait. But when two more nappies showed blood, we knew she needed to be reviewed in the Emergency Department. When we arrived, the doctors checked her vitals and discovered her oxygen saturation was dangerously low—in the 60s when her baseline was in the 80s. They quickly administered oxygen, but as the hours went by, her condition only worsened.
She was placed on high-flow oxygen and transferred to the Pediatric Intensive Care Unit (PICU). It was terrifying watching my little girl struggling to breathe, surrounded by machines and wires. Eventually, they managed to stabilise her enough to move her to a ward. That’s when the real fight began.
A Mother’s Intuition
I requested that Georgia be moved to the cardiac ward, where they have centralised monitoring. With her complex cardiac history and unpredictable oxygen desaturations, I knew it was the safest place for her. I also argued that if she had a severe desaturation on a non-cardiac ward, they’d call a MET (Medical Emergency Team), causing unnecessary trauma for a little girl who’d already been through so much.
But because Georgia tested positive for a respiratory virus—despite having no symptoms—Cardiology dismissed my concerns. They were convinced it wasn’t related to her heart and said she didn’t need to be reviewed. They sent her to a general paediatrics ward instead.
I knew in my heart this was wrong. Georgia had been hospitalised fifteen times in the past year with respiratory infections, and this was not her usual presentation. I voiced my concerns repeatedly, but they wouldn’t listen.
Within an hour of being on the general ward, Georgia had a significant desaturation. There was no centralised monitoring, so I had to call a ‘Staff Assist’ myself, which escalated to a MET call. I was furious and terrified.
For three days, I didn’t sleep. I was the only one watching her oxygen levels, responsible for raising the alarm when she desaturated. For three days, Georgia continued to have prolonged, profound desaturations without explanation. For three days, I begged for a cardiology consult and a transfer to the cardiac ward, but no one listened.
I even have photos that still haunt me—one of her tiny hand lying limp when they told me she didn’t need a cardiology consult, and another where her oxygen saturations were dropping into the 50s. It was terrifying to witness, knowing in my gut that something was wrong and feeling powerless to convince anyone to take it seriously.
Calling Ryan’s Rule
That night, after another terrifying episode, the PICU team was called again. The nurse, ACE Registrar, and PICU Registrar all told me the same thing: “You need to call a Ryan’s Rule.”
The next morning, I knew I had no other choice. My heart was racing as I picked up the phone. I dialled the number, explained my concerns and my request for a cardiology consult and a transfer to the cardiac ward, then hung up. I felt like I was about to break down but knew I had to stay strong for Georgia.
I walked out to find our nurse, and by the time I returned, a safety nurse was already in the room. I was so overwhelmed that I nearly cried at the sight of her. She listened as I explained everything that had happened, and to my relief, she agreed that my concerns were valid and my requests reasonable.
She was calm, compassionate, and supportive. She even asked if I needed someone to stay with me while she organised the consult and transfer. Finally, I felt heard. Finally, someone was taking action.
Within hours, Georgia was transferred to the cardiac ward, and we received the cardiology consult we’d been fighting for.
A Mother's Instinct Proven Right
When they finally did a cardiac catheter and checked her heart, the truth was revealed—there was cardiac involvement all along. Georgia had opened up a large collateral vessel, causing blood to bypass her lungs. It explained everything: the desaturations, the struggle to breathe, the terrifying episodes I watched helplessly.
I was right the whole time. My gut feeling wasn’t just worry—it was accurate, and it saved my daughter’s life.
I remember staring at that photo of her tiny hand, taken at the very moment they told me she didn’t need a cardiology consult. It was proof of what I knew deep inside—that they were missing something critical. And they were. Georgia’s heart was struggling, and no one was listening
Breaking Down After the Battle
Once Georgia was settled on the cardiac ward and asleep, the weight of it all hit me. I sat by her bed, watching her breathe peacefully for the first time in days, and I sobbed. The exhaustion, the fear, the fight to be heard—it all came crashing down.
I hate conflict. Standing up to medical professionals and challenging their decisions pushed me so far out of my comfort zone. But I would do it again in a heartbeat for my baby girl.
Why Ryan’s Rule Matters
Ryan’s Rule gave me a voice when no one would listen. It allowed me to escalate my concerns when I knew something was wrong. Without it, I don’t want to imagine what could have happened.
Since then, we’ve had another admission where Cardiology initially refused to review Georgia. I told them that if they didn’t show up by a specific time, I’d be calling Ryan’s Rule again. That was enough to get their attention. Once they finally reviewed her, they admitted it was cardiac-related.
I’m sharing our story because every parent needs to know about Ryan’s Rule. It’s your right to advocate for your child. You know them better than anyone else, and if you feel like something’s wrong, trust your instincts.
Our Message to Other Parents
We are forever indebted to Ryan and his family for creating this pathway. Because of Ryan’s Rule, Georgia is here with us today. I want every parent to know that it’s okay to speak up. It’s okay to question, to challenge, and to fight for your child.
To every parent reading this—trust your gut. If something feels wrong, don’t be afraid to escalate your concerns. Ryan’s Rule saved my daughter’s life. It could save yours too.
In Gratitude and Hope
I share our story not only to raise awareness but to empower other parents. It’s scary to go against the grain, to question medical professionals, but no one knows your child better than you do. If I hadn’t trusted my instincts, we could have lost Georgia.
Thank you to the safety nurse who listened, to the PICU team who supported us, and to everyone who helped save my little girl. We will always be grateful.
In loving gratitude to Ryan’s family and to every medical professional who fought for Georgia.
With Love,
Georgia's Mama ❤️
