Mabel was born in the early hours of the morning on the 1st of March. She passed away in our arms in the the early hours of the morning on the 22nd of September. She was just 6.5 months old.
It is so incredibly difficult for me to write this and to see the photos of Mabel (above) in hospital. But she is important and so is her story. So here I am, doing my best.
Monday the 13th of September was like any other day. Mabel's sister, Ruby, was at kindy, my husband was working, and Mabel and I were just hanging out at home. Our day was filled with playing, singing, tasting different foods and trying out her brand new rainbow swing for the first time on our front deck. Mabel was really happy and full of joy.
In the evening, after playing with her big sister, having dinner with all of us and a splashy bath (she loved the water), I fed Mabel and put her to bed. She was doing so well, chatting to herself and holding her cuddly toy dog for a little before she fell asleep. It was a good day.
At around 11.30pm that evening, Mabel vomited. She then vomited a few more times before falling asleep on me on the couch at around 3am. We knew she was sick, but thought she just had a tummy bug. Like we had experienced with Ruby in the past a few times.
At around 5am, Mabel woke up and I fed her, but she vomited again and would not keep much of anything down. So at around 10am on the 14th, we decided to take her into the ED at the Queensland Children's Hospital, thinking she probably needed fluids and that the GP wouldn't be able to do much.
We got to the ED around 11am, went through triage, and saw a doctor who gave Mabel ondansetron (anti-nausea medication) and put us on a "trial by fluids" of 5ml of fluid every 5 mins. Mabel was exhausted and miserable, but sat up to drink out of a little cup every 5 mins. She loved drinking out of cups so this worked better than a bottle.
She kept down around 160ml. I was also asked to try to catch a urine sample. The clinicians assumed Mabel had gastro or a UTI, and no testing was done.
Later in the afternoon, Mabel vomited again and so the decision was made to put in a nasal-gastric tube to make sure she got fluids and to monitor her overnight in short stays. My husband, John, went home to look after Ruby and I stayed with Mabel. We thought she'd be fine in the morning.
Throughout the night, Mabel was very unsettled. Waking and crying very often, settling only when I put my hand on her. I moved her into the very narrow folded out chair so I could lie next to her. She was clearly miserable, but again, we trusted the doctors were monitoring her and knew what they were doing.
At around 5am, Mabel started to whinge and cry constantly. I spent time walking around the ward with her, trying to settle her, wanting her to sleep. After, two bad nights, I thought sleep was what she needed. No one seemed too concerned seeing me walk up and down the halls.
A doctor came in around 7am, I told her Mabel wouldn't breastfeed as she was too weak and that she wouldn't drink anything. The doctor told me not to worry as she has had a lot of fluids overnight. Mabel was really unhappy and I could not settle her.
John came in around 830am, after dropping Ruby at kindy, and I went home to shower. John sent me a photo of Mabel asleep on his chest, we were happy as it seemed our little girl was finally getting some rest. Mabel never opened her eyes again.
On my way back to the hospital, I received a phone call from John. Another doctor had come in around 11am and was the first to actually realise something was not right. He ordered a catheter and lumbar puncture. Mabel didn't cry.
I parked in emergency and came in to find my sweet girl surrounded by people in red zone. Lots of tubes, lots of antibiotics. The decision was made to take her up to the Paediatric ICU. Despite being very worried, we were still convinced she would be ok. That she was in the best hands.
The next week was a nightmare we couldn't wake from. Honestly, I still feel like I'm living in some sort of horrifying alternate reality.
The first MRI was not good. They had identified pneumococcal bacteria in Mabel's spinal fluid and there was already widespread damage to her brain. At this point, doctors were saying "moderate to severe disability". We had no idea what this meant. Despite being intubated, Mabel was still breathing on her own. We still had hope things might turn around.
Three days later, another MRI showed that things were worse. The pneumococcal bacteria had reacted well to penicillin, but the earlier damage done was too extensive and there were secondary complications caused by vasculitis. It all happened so quickly.
We made the decision to take out the breathing tube and take out all other tubes, apart from the morphine to stop any pain. The pain and torture of watching our daughter continue to breathe for 15 hours, before she passed away in the morning of the 22nd of September, is utterly indescribable. No parent, or child, should have to bear this.
I will be forever haunted by the time that we were in hospital, before Mabel was moved to ICU. We thought she was in the best hands and we trusted the clinicians. They did not seem worried, so we weren't worried. We are currently involved in a full review process with the QCH as we believe the doctors simply assumed that Mabel had gastro and no testing was done at all. Despite the signs and symptoms that we as parents now know. We got her to hospital early and they should have been aware that pneumococcal disease is a possibility, especially in little babies. We feel extremely upset and let down by the hospital we thought we could trust.
I wish I could fix this. I would do absolutely anything to take Mabel's place. But I can't. So raising awareness of pneumococcal disease among hospital staff, GPs and the public is something I have to do. Mabel will continue to live on, not only in our memories, but in how her story will and must help others.
Carly - Mabel's Mum.
We will never stop talking about Mabel.
She is important, her life matters and everything I do is in her honour.
Join our event at the Pineapple Hotel on the 27th of August, 2022.
My sweet baby girl Mabel. You would now be 9 months old.
When I first tried to write this for you, I had no words. And then so many, tumbling out of my head. Whilst at the same time refusing to believe what had happened. To you. To us.
My mind keeps telling me you are just napping in your cot; or that I need to rush home to feed you; but it also keeps reminding me you have gone. When I was first pregnant with you, I remember you made me feel so sick those first 15 weeks. Certainly made sure I knew you were there. And you came ahead of schedule, ready to get out into the world. We were only in hospital that one night. Home the next day, driving slow, taking the long way to avoid the speed bumps, walking up our front steps in the rain. Feels like only yesterday.
You were much more settled once we got home, and home felt like you had always been there. We had simply been waiting for you. How or why this happened to you, we don't know. How you, made of love, sunshine and joy, could be taken away so quickly. We barely had any time. It makes me so sad. So angry. How can we possibly bear the unbearable. You deserve so much better than this.
You were waking up each day with a big smile on your face. Hanging out with us. Laughing at us, especially your big sister Ruby running around or doing crazy dances. Going to new places. Trying new foods – so far your favourites were broccoli, egg salad, curry chicken, avocado, sweet potato, peanut butter and crossiants. You loved splashing around in the bath. Listening to us sing and play music with you. Your favourite songs with me seemed to be the Jurassic Park theme song, Dream a little dream, One day More from Les Mis, You are my Sunshine and Twinkle Twinkle Little Star. Plus anything your Dad or Ruby would sing.
You loved playing peekaboo. Blowing raspberries. Jumping in your bouncer. You would get excited about almost anything you were able to hold or touch – fancy toys, your xylophone, the ukulele, plastic cups, wine glasses, coffee cups; my sunglasses and car keys. In the car you loved musical toys like Ruby’s Emma Wiggle.
I loved seeing you waiting and smiling in anticipation for dad to turn around from his computer, or for me to pop my head out of the bathroom. Just fitting in to the chaos of our family so well that it seemed crazy to think about a time before you weren’t in it.
You deserve so much better than this.
You deserve to learn to crawl, to walk, to run. You deserve to have birthdays and Christmases. To play with and fight over toys with Ruby. To have favourite foods, games, movies, clothes. To decide whether to keep your hair short or long. To learn your colours, your shapes, to count, to read. You deserve the chance to grow up.
I’m so desperate to know what you would have looked like, with your beautiful fair hair, blue green eyes and the dimple in your chin. I so want to be worrying about buying your first walking shoes, scooping you up when you fall. So desperate to hear you say “mama”.
Life is so unfair and we miss you so, so much. I can still feel you here – carrying you, rocking you, the softness of your skin. I can still feel your little hand in mine. I miss you trying to give me kisses and dribbling all over me. I miss you burying your face into my neck when you were tired and grabbing on to my face. I miss singing Baby Mine to calm you. I would do anything to do it all again.
I know I had to say goodbye but I also know that you will always be here with us somehow. I have to believe that. We will never stop talking to you and about you.
Mabel, always remember that you matter so much and you are so deeply, greatly loved. You brought to this world things no one else could. Even though you are so small, you have made such a great impact that will never fade. I only wish you could see it.
I want you, and Ruby, to be proud of me. And I hope that somehow, in some way, we will meet again.
Any funds raised will go directly towards raising awareness of pneumococcal meningitis and to furthering research into early diagnostic tools.