Parents of toddler with Down syndrome speak out after airline nightmare

Flying with young children is stressful enough, especially when your child has complex medical needs.

But for little Willow and her parents, Dee and Kayne, their latest travel nightmare wasn’t caused by her condition, but by an airline bungle.

They say this isn’t the first time it’s happened and sadly, it won’t be the last.

“I would say she has travelled more than most 20-month-olds. She’s probably got about 60 flights to be honest,” Dee told A Current Affair.

“And I think nearly every flight, or at least every second flight, we’re having some sort of inconsistency.“

Willow is already a frequent flyer, and just boarding can be turbulent.

“Just not knowing what you’re going to be faced with once you get to the counter … every time we go it’s kind of a fight for us to get onto the plane,” Kayne told A Current Affair.

Between running swim schools across Queensland and managing Willow’s medical appointments, Dee and Kayne are constantly in the air with their three girls.

For Willow, who has Down syndrome, flying means travelling with vital medical equipment, including the nasogastric tube she needs for food.

“I travel with it, especially her meds and her feeding stuff because if it gets lost, she has consequences,” Dee told A Current Affair.

“If we lose a bag, I can’t feed her.“

Dee and Kayne have become flight rule experts. But they can’t say the same for airline staff.

“We know what we need to bring and the clearances we need … but when we get to the counter, the person behind the counter doesn’t know,” Dee said.

While flying from Mackay to Brisbane on Virgin Australia recently, Dee was brought to tears when she and Willow were held up for more than an hour, with staff demanding medical clearance for Willow’s feeding tube.

Even more frustrating, Willow had flown with Virgin just three days earlier without issue.

“I flew up on Monday with no medical clearance, exactly the same child, exactly the same feeding tube, and then when we came home from Mackay on Thursday, we were at the airport and then all of a sudden we needed to get a medical clearance,” Dee said.

A Current Affair can confirm that nasogastric feeding tubes do not require medical clearance on any of the three major Australian carriers, including Virgin.

“There is no consistency, like even if I ring up to speak to someone it’s just different from one person to the next,” Dee said.

“And then it gets to the point of frustration where we just say, ‘Well, fine, we’ll just rip it out and put a new one in’. That was pretty shitty,” Kayne said.

At her wits’ end, Dee took to social media to post about her experience.

Within days, her post had almost 1000 comments sharing frustrations with the Australian airlines.

“From our experience it’s an all airline problem, not just a Virgin problem,” Kayne said.

“We want to make sure that people that have children or people with additional needs go to the airport, and it will be the same whether we go on a Monday, Tuesday or in a week’s time,” Dee said.

“I don’t care if I need to fill in medical clearance forms … that’s fine, but I just need to know that is the process for Willow.“

The airline has reached out to the couple and since apologised.

In a statement, a Virgin Australia spokesperson told A Current Affair, “We have connected with Willow’s family to apologise for their experience and offer immediate support.

“We understand the importance of supporting guests with accessibility requirements throughout their journey, and are committed to providing an accessible and inclusive travel experience for all our guests.“

“They refunded our flight, which is amazing and good customer service … but I feel like great customer service would be actually saying: this is what we can do moving forward,” Dee said.