'Mabel never opened her eyes again': Mum's mission after baby girl dies of pneumococcal disease

In September last year, Carly Goya was at home with her gorgeous baby, Mabel, blissfully unaware of the nightmare that would soon unfold.

Mabel was healthy, fully vaccinated, and just 6.5 months old.

"The day was filled with playing, singing, tasting different foods and trying out Mabel's brand new rainbow swing for the first time on our front deck," the Brisbane mum-of-two tells 9Honey Parenting. "She was really happy, relaxed and full of joy."

That night, after a bath and dinner, Mabel was put to bed as normal cuddling her favourite dog toy. At around 11.30pm, 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," recalls Carly.

Mabel passed away when she was just 6.5 months old — Carly has set up a foundation in Mabel's name (Supplied)

When the little girl still couldn't keep anything down by the morning, Carly decided to take her into the Emergency Department at the Queensland Children's Hospital (QCH).

'She started to winge and cry constantly'

That afternoon, Mabel was still struggling to hold down any fluids so doctors took a urine sample, put in a nasal-gastric tube and said they would monitor her overnight.

"Throughout the night, Mabel was very unsettled," Carly explains. "Waking and crying very often, settling only when I put my hand on her and eventually got into the fold-out chair next to me.

At around 5am, Mabel started to winge and cry constantly. I spent time walking around the ward with her, trying to settle her, wanting her to sleep. No one seemed too concerned seeing me walk up and down the halls."

When the doctor came in at 7am, he told Carly not to worry as Mabel had plenty of fluids via the tube. Her husband John has turned up around 8.30am after dropping their eldest daughter Ruby to kindy, so Carly 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," she recalls. "Mabel never opened her eyes again."

As Carly drove back to the hospital, her husband John told her that another had ordered a catheter and lumbar puncture. Mabel didn't even flinch. As Carly ran back into emergency, she came upon a heartbreaking scene.

"My sweet girl was surrounded by people in red zone. Lots of tubes, lots of antibiotics," Carly explains. "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 can only be described by Carly as "a nightmare we couldn't wake from".

'We still had hope'

The first MRI 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," Carly admits. "The worst-case scenario is not something I could even fathom."

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 (blood restricted going to the brain).

"They didn't even bring the scans... we could tell by the looks on their faces...".

Baby Mabel deteriorated rapidly after arriving at hospital (Supplied)

Eventually, the Brisbane couple had to make the heartbreaking decision to take out Mabel's breathing tube and all other tubes, apart from the morphine to stop any pain.

'Pain and torture'

"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," a devastated Carly recalls. "No parent, or child, should have to bear this."

"Honestly, I still feel like I'm living in some sort of horrifying alternate reality, five months later."

As they moved up to the 'Quiet Room' in the hospital, even Ruby came to say goodbye to her little sister.

"We told her, 'mummy and daddy love you and Mabel so much, and the doctors tried really hard, but they couldn't fix Mabel so she has gone to the stars," Carly explains through tears. "And we talk about Mabel every day.. and tell Ruby she is always with us."

As it turned out, Mabel had contracted pneumococcal meningitis - a life-threatening infectious disease that causes inflammation of the layers that surround the brain and spinal cord. Pneumococcal bacteria is usually carried harmlessly in the back of the throat by both adults and children. Sometimes, the bacteria grow and spread.

While there is a vaccine, Prevenar 13, given to infants and children it only covers 13 of the most common strains of pneumococcus bacteria. There are over 90 strains - including the one that took Mabel's life (10E). Prevenar 20, which does contain strain 10E, is under development, but not yet approved for use in children by the TGA in Australia.

Mission for Mabel

"After losing Mabel, I couldn't just do nothing. I just wanted to fix it. I would do anything to take her place. She didn't deserve this to happen. I want people to know her. And so I am doing everything I can to share her story and raise awareness of pneumococcal disease among hospital staff, GPs and the public."

Carly is currently involved in a full review of Mabel's case with CHQ. In a statement to 9Honey Parenting, a spokesperson for Children's Health Queensland acknowledged the impact of Mabel's death on her family and "continues to extend our deepest condolences".

"Every day our dedicated teams work tirelessly to provide young patients with the best possible outcomes and are significantly impacted by the death of a child in their care," they said.

"We take the sudden and unexpected death of a child extremely seriously and share a family's need for answers when this occurs.

"In these circumstances, we work closely with families to thoroughly investigate each step of their child's care experience and share the findings with them."

For Carly, while nothing will ease her pain, she has taken steps to ensure Mabel's journey will help others.

"I will be forever haunted by the time that we were in hospital, before Mabel was moved to ICU. They did not seem worried, so we weren't worried," she tells 9Honey Parenting.

"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."

Carly is resolute about her mission and has set up a foundation in her daughter's name - The Mabel Olivie Airi Foundation to honour Mabel's life.

"We hope to raise awareness of this devastating disease and to raise funds to help others," Carly asserts. "Mabel will continue to live on, not only in our memories, but in how her story will and must help others.:"

'Know the signs'

Along with fundraising events, Carly is calling on the public to be more aware of the signs and symptoms of pneumococcal meningitis from the Australian Government Department of Health. These signs and symptoms of pneumococcal meningitis are often treated like gastroenteritis or a UTI.

"Meningitis is a medical emergency. It can develop in a number of hours," states, Meningitis Centre Australia, who is working closely with the foundation.

Symptoms can include:

sore ear(s), hearing loss and fever (middle ear infection)
sore face, blocked nose, headaches and a yellow-green mucus (sinus infection)
high fever, headache, nausea, vomiting, stiff neck and coma (brain and spinal cord infection)
fever, cough, chest pain and problems breathing (lung infection)
fever, muscle aches and pains, and headaches (bloodstream infection)
pain, swelling and stiffness in the affected joint (joint infection)
fever, pain in the bone and stiffness (bone infection).

"There is not a single moment that I don't think about her," Carly says through tears, adding her message to baby Mabel.

"Life is so unfair and we miss you so, so much. I can still feel you here �C 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 singing Baby Mine to calm you. I would do anything to do it all again."

Please visit www.mabeloliveairi.org to find out more Mabel's story and donate

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