Baby suffers permanent brain injury from common snack

Stephanie Johnson has been working with children and families all of her life, but nothing could have prepared her for what would happen to her daughter one Sunday afternoon when she and her sister were enjoying a late afternoon tea.

"My five-year-old daughter Millie witnessed the whole event," Stephanie tells 9Honey. "She's at an age now where she is starting to comprehend it but it's difficult for her. She asks when Rani will walk and talk because she sees her friend's little siblings doing this.

"Then there are multiple support workers and therapists who come to the house for Rani," she continues. "We try to include Millie as much as possible."

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It was April 26 and Stephanie placed Rani, then eight months old, in her high chair and Millie at the kitchen bench for a snack.

"Rani was a really happy little girl," Stephanie says. "She did suffer from colic for a long time but she was full of smiles and she loved her baths."

She had given Rani some avocado which she quickly ate quickly before Stephanie gave her a piece of mango which she also wolfed down.

"I gave her a second piece and turned around and there was no sound, she was just choking," Stephanie says.

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She knew infant first aid due to her work and began trying to dislodge the piece of mango from her daughter's throat, calling out for her partner Rogan at the same time.

Rogan, who had been in their backyard building a cubby house for the girls, ran in and took Rani while Stephanie called for an ambulance.

The frantic parents raced to their front door to wait for help where Rogan performed CPR on his daughter which doctors later advised had saved Rani's life.

"By this time she was blue, she was in cardiac arrest," Stephanie says.

Paramedics arrived and began treating the little girl. They struggled to stabilise her but eventually she was able to be flown to Queensland Children's Hospital where she was placed in the intensive care unit (ICU).

"There were about 15 staff waiting for her," Stephanie says. "I was in quite a bit of shock. I went to a coffee or tea room and sat down and let them do their thing. I sat by myself thinking about what had happened.

"I never understood the concept that life can change in a second," she continues. "You hear that, but you really don't understand until it happens to you. Your life literally can change in a second."

Rani was in the ICU for nine days.

"Seeing her in ICU was horrible," Stephanie says. "She was connected to lots and lots of tubes and machines and it was very overwhelming."

On the fourth day Stephanie and Rogan were told those in charge of their daughter's care would be meeting to discuss her condition. They mentioned a palliative care team.

"I thought that meant she would pass away," Stephanie says. "I didn't understand at that stage that palliative care is for anyone with a life-limiting condition, to help keep them comfortable."

It was on the fifth day that the parents were given the devastating news.

"They said she'd suffered a hypoxic brain injury and she would be like someone with severe cerebral palsy," Stephanie recalls. "They said she would probably never walk, talk or eat independently. I just remember looking at the wall. I kind of went somewhere else."

While Stephanie and Rogan still hope for a miracle, Rani has made some small improvements. She can smile and laugh but is fully dependent on others for her daily care.

"I'm her main carer with the support of carers and nursing support," Stephanie explains. "It takes a lot. There is no typical day. It all depends on how she is. She has a seizure disorder and her condition is very very very complex after the accident."

Rani is tetraplegia or quadriplegic, so cannot voluntarily move her upper and lower body. She has dystonia, a movement disorder in which your muscles contract involuntarily, causing repetitive or twisting movements.

Rani also has hypertonia which causes stiffness which impacts muscle movement.

She is non verbal and non mobile and in addition to the seizure disorder she also has a sleep disorder and is vision and hearing impaired.

"We have to make sure she is positioned correctly so she can breathe and we have to regularly change her position to prevent pressure sores," Stephanie explains. "She can't swallow so we use a suction machine to manage that. She is fed via a mic key button and has multiple medications throughout the day to keep her comfortable and her seizures at bay."

"We still do live in hope every day," she says. "She opens her eyes but she can't focus. She knows our voices and smells and touches and stuff like that. We just live in hope every day. The way I cope with it is, a lot of families have lost their children due to accidents. We have been granted extra time. As much as life has changed, I'm sure those parents would kill to be in our position, to still have their child."

Stephanie has even started eating mango again as part of her healing.

"I had a fear and hatred of mango but after seeing a therapist I was reminded that mango isn't going to go away, so I have eaten it again and am able to enjoy it like before, but Millie is very scared of mango. If she sees people at school eating mango she gets worried."

To this day Stephanie says she doesn't know if her daughter's accident was just choking or also the result of a food allergy.

"I spent a lot of time in hospital looking through photos of her and the first time she ate mango she had a rash around her mouth," Stephanie says.

She has since learned that it is often the second time someone eats a food they are allergic to that is the worst.

But they will never know, and knowing won't change anything.

Over the past two years the family has spent a lot of time at Queensland Children's Hospital and have been helped by both the Children's Hospital Foundation and Hummingbird House, a palliative care centre for babies, children and young people.

"The Children's Hospital Foundation has been very helpful," she says. "Because we had Millie with us and my family is in NSW and Rogan's is in New Zealand. We have been able to see my family when Rani was in ICU but it became hard because we'd be sleeping at the motel and swapping over to spend time with Rani.

"The Foundation gave Millie craft and she could go to their dedicated playroom in Queensland Children's Hospital, Kidzone, and play. They also provided for Rani while she was in ICU. We'd look forward to music therapy with Erin. She'd come and just play music for Rani on her guitar, singing children's songs and it was very soothing also for us.

"When Rani was in NICU we were pretty much broken. Erin has a one of a kind voice, the voice of an angel."

Stephanie shares her family's story on the Facebook page Hope 4 Rani and she says since starting the page, she has heard from others who have completed CPR and infant CPR training and refresher courses.

"It's kind of more to document our journey and create memories," Stephanie says. "I'm honest about Rani and how hard life can sometimes be."

Rani turns three in September and Stephanie says like her previous birthdays, it will be a difficult day.

"She has lots of friends and followers who love to follower her on Facebook."

Donate to the Nine Telethon in support of Children's Hospital Foundation by visiting 9telethon.com.au or calling 1800 909 900. Queensland viewers can tune into the Nine Telethon on Saturday, 23 April at 7pm on Channel 9 for more inspiring stories.