21
Feb 2020
Kira's Courage
Published in General on February 21, 2020
 
                                                            Kira is an 11-month-old fighter. Not too long ago, she suffered from five fatal abdominal and cardiac illnesses. One of her life-threatening conditions include being born with a heart located outside her chest.
 
She’s currently preparing for her first birthday, a celebration although typical to other babies, is already a big milestone for Kira. Her parents, Kim and Chris Gascoigne didn’t think she would make it this long. At the same time, this year also marks the 150th birthday of the Royal Children’s Hospital.
 
“We are incredibly relieved that Kira finally got to come home with us. We are so grateful for all the staff at the RCH for helping her get to this point,” Chris said.
 
Kira can be considered a miracle baby in so many ways. She was conceived through several IVF rounds and was the only embryo that survived genetic testing.
 
When her mom, Kim, had her 22-week checkup, the scan revealed a deadly and rare condition about their baby’s heart. But the couple didn’t lose their hope just yet. At this point, their baby was already moving inside her mom. The pair also had shortlisted several baby names to choose from. They were also daydreaming about their many family adventures in the future and the books that they’ll be reading to her.
 
A week later, they acquired an updated diagnosis which gave them more reassurance. Although her heart problem was still there, they learned that it was easier to fix than what they initially thought. Furthermore, they would be able to enjoy six months at home with her before her operation and treatment commence.
 
Kim gave birth to Kira on February 22 of last year. She was able to breathe without any apparatus but it was noticeable that her breathing was laborious. When she was then taken to the resuscitation station, her father immediately noticed that her heart was flapping under a piece of skin.
 
Typically, parents of a newborn expect to examine all the external body parts of the baby such as toes and fingers. Making sure that their organs are inside her body is certainly not common.
 
At that moment, he knew that it didn’t look right. After pressing a buzzer, the room was suddenly filled with twelve more medical personnel. Kira was sedated and was prepared to be transferred to the Royal Children’s Hospital.
 
“We didn’t even know if she would survive that first night. It happened so quickly, I didn’t feel like I had a baby,” Kim said.
 
The Pentalogy of Cantrell was the diagnosis of Kira’s condition. This refers to a cluster of abnormalities, which in Kira’s case involved four heart defects, that prevent blood circulation in the body altogether.
 
Kira’s heart was positioned outside her chest and only covered by a thin membrane. Also, one of her breast bones was missing.
 
When Chris relayed the news to her wife, Kim was still admitted to another hospital since she just gave birth. In her room, she would Google tons and tons of information to have a better grasp on the diagnosis, only to find heartbreaking results. Online sources showed that 95% of babies born with ectopic hearts do not survive. Luckily for the three of them, Kira was cared for at a renowned health center that had previously performed more ectopic heart surgeries than anywhere else in the entire world. All of those operations were successful as well.
 
During the first three months of Kira’s stay in RCH, the main priority was to keep her condition stable. For Chris and Kim, this meant that they will be experiencing their “firsts” with Kira quite differently than most parents.  They were able to first cuddle with Kira while she had tubes attached to her tiny body. She had her first bath at nine weeks old. Her first walk, on the other hand, was around the cardiac ward alongside a monitor and oxygen tank.
 
“I couldn’t bond with her for such a long time, maybe even until we got home. I had all these plans for what this time with our baby would be, and then I faced planning a funeral. There was never talk about what was ahead, it was only ever one day at a time,” Kim added.
 
                                                                                     
                                                                                     
                                                                                     
                                                                                     
                                                                                     
                                                                                     
                                                                                     
                                                                                    ![“Surprise Noises Can Feel Like Pain”: New Airport Rule Eases Travel for Autistic Passengers Emma Beardsley once dreaded going through airport security. “I used to panic every time they made me take my headphones off at security,” she recalls. “The noise and the unpredictability can be overwhelming.” Now, thanks to a new policy allowing noise-cancelling headphones to remain on during security checks, Beardsley says she can “travel more confidently and safely.”
In Australia, one in four people lives with a disability, yet the travel system has often failed to accommodate varied needs. Autism-inclusion advocates at Aspect Autism Friendly have welcomed the government’s updated guidelines that let autistic travellers keep their noise-reducing headphones on during screening, calling it a “major step” toward more accessible air travel.
Dr Tom Tutton, head of Aspect Autism Friendly, emphasises the significance of travel in people’s lives: it connects them with family, supports work and learning, and offers new experiences. But he notes the typical airport environment can be especially intense for autistic travellers:
“Airports are busy, noisy, random and quite confusing places … you’ve got renovations, food courts, blenders, coffee grinders, trolleys clattering … and constant security announcements. It’s really, really overwhelming.”
“What might be an irritation for me is something that would absolutely destroy my colleague [who has autism]. Surprise noises of a certain tone or volume can genuinely be experienced as painful.”
Under the new policy — now published on the Australian Government’s Department of Home Affairs website — passengers who rely on noise-cancelling headphones as a disability support may request to wear them through body scanners. The headphones may undergo secondary inspection instead of being forcibly removed.
Dr Tutton describes this adjustment as small in procedure but huge in impact: it removes a key point of sensory distress at a critical moment in the journey. Aspect Autism Friendly is collaborating with airports to ensure that all security staff are informed of the change.
For many autistic travellers, headphones aren’t just optional — they are essential to navigating loud, unpredictable environments. Until now, being required to remove them during security has caused distress or even deterred travel.
Aspect Autism Friendly also works directly with airports, offering staff training, autism-friendly audits, visual stories, sensory maps, and other accommodations. Their prior collaborations include autism-friendly initiatives with Qantas. Dr Tutton notes:
“Airports have become this big focus for us of trying to make that little bit of travel easier and better.”
He advises people planning trips for travellers with disabilities to consult airport websites ahead of time. Some airports already offer quiet rooms or sensory zones — Adelaide, for instance, provides spaces where travellers can step away from the noise and regroup before boarding.
Beyond helping autistic individuals, Dr Tutton believes that more accessible airports benefit everyone. “These supports help lots of other people too,” he says. “When people are more patient, kind and supportive, the benefits flow to everyone. We all prefer environments that are well-structured, sensory-friendly, predictable and easy to navigate.”](https://c3eeedc15c0611d84c18-6d9497f165d09befa49b878e755ba3c4.ssl.cf4.rackcdn.com/photos/blogs/article-1061-1759742013.jpg) 
                                                                                    