Supplied
- Five-week-old Arlo was diagnosed with laryngomalacia after his mum noticed he had a high temperature and high pitched breathing
- When Arlo turned blue repeatedly his Mum, Georgia, panicked.
- Surgery reshaped the tissue on his voice box
Here Georgia, 30, Canberra, ACT, tells the story in her own words
Cradling my baby son, Arlo, I waited for the doctor to see us.
It was July 2017, and my five-week-old boy was sick with a viral infection, so I’d taken him to hospital.
Along with a high temperature, Arlo also had high-pitched breathing, so he’d been looked over by several specialists.
‘Arlo has laryngomalacia. It’s a condition that affects the tissue of the voice box’
‘Arlo has laryngomalacia. It’s a condition that affects the tissue of the voice box. This is why his breathing is high-pitched,’ the doctor explained to me.
I was told that Arlo would grow out of it, but it would affect his breathing and feeding.
Back at home, where I lived with my parents, Kerry, then 59, and Kevin, 62, I told them the news.
‘Oh poor Arlo,’ Mum soothed.
Over the next few months there were a few occasions where Arlo’s breathing was so bad I had to take him to hospital.
When he was around six months old, I noticed that the skin around his nose and chin had turned blue.
Panicking and realising he was holding his breath, I breathed on his face, hoping to snap him out of it. After a few seconds, he was breathing again and the blueness had gone.
Taking Arlo to the hospital, a doctor explained this might happen now and again.
‘Just get yourself here whenever it does,’ he said.
‘Arlo’s blue spells continued, and sometimes he also stopped eating.’
It was such a worry.
Arlo’s blue spells continued, and sometimes he also stopped eating. On several occasions he had to rely on nasogastric tubes to help him breathe and feed.
‘We need him to grow before we can do anything else,’ the doctor said, explaining my boy was too underweight to recover easily from an op.
When he was 18 months old, we saw an ear, nose and throat doctor who specialised in airway disorders in kids.
Looking at scans, he circled everything in Arlo’s airways that would need to be operated on.
‘The food and drink is going into his lungs rather than his oesophagus, causing him to choke and turn blue,’ he explained.
One month later, my little boy went into surgery, where they corrected and reshaped the tissue on his voice box.
During the operation it was also found that Arlo had tracheomalacia, a windpipe disorder that causes the airways to collapse.
‘He may need therapy or surgery,’ the doctor explained.
Present in newborn babies, laryngomalacia is a type of abnormality that occurs when the tissues located above the voice box are floppy and fall back over
What is laryngomalacia?
the airway. This results in noisy breathing.
As Arlo continued to hit his milestones, he had more operations to help with his condition.
My happy boy took it all in his stride, but his relationship with eating was always hard.
Arlo would refuse a lot of food, except plain things such as chicken nuggets, chips and noodles. And it was a struggle to get him to eat at all.
‘Come on, love,’ I’d gently encourage.
Then, in July 2023, Arlo, then six, stopped eating altogether.
To keep him alive, he had to constantly be fed through a nasogastric tube.
Arlo was diagnosed with an eating disorder called AFRID (avoidant restrictive food intake disorder).
By September 2024, my boy had surgery where a permanent gastrostomy tube was fitted in his tummy.
‘You’re so brave,’ I told him.’
Medics showed us how to use the tube and maintain it.
Every night, I attached the extension tube from Arlo’s body to the feeding pouch, which pumped his body with all of the essential nutrients he needed to survive.
‘You’re so brave,’ I told him.
Arlo, now seven, is still reliant on the tube. He doesn’t like to eat many foods, but he is quite partial to a T-bone steak now and again.
Laryngomalacia Symptoms
- loud, noisy breathing
- difficulty swallowing (dysphagia)
- apnoea (long pauses in breathing)
- cyanosis (a condition that causes the skin to develop a bluish hue)
- aspiration (pulling food into the lungs)
- poor weight gain
- gastro-oesophageal reflux disease (gord)
- a tugging or ‘pulling in’ at the neck or chest when breathing
Most infants will get better without needing any medical intervention, others need surgery to fix it.
miraclebabies.org.au
‘Yum,’ he grins.
He has also since been diagnosed with autism and ADHD.
My beautiful boy has been through a rough time, but his bright, kind personality never fades.
He adores animals and last December, the Starlight Children’s Foundation very kindly organised a private visit to Australia Zoo, which Arlo loved so much.
Sadly, there isn’t a cure for Arlo’s conditions, but with the help of the professionals, my parents and I are doing all we can to make life as breezy as possible for him.
And when I see that cheeky smile on his face, I’m reminded just how far he’s come.
Donate online via to The Starlight Foundation before June 30 as we’re hoping to raise $1.3M to help make hospital a happy place for 33,000 sick kids like Arlo.
