Donna Lee has seen her tiny babies go blue and limp as they struggle to get enough oxygen into their lungs.
Both boys have laryngomalacia, a condition where they have a soft larynx that collapses and blocks the airway.
Every second without oxygen is critical so lying flat for a nappy change or a bottle feed can be fatal.
The combination of trying to breathe, suck and swallow is just too much to coordinate and too dangerous.
July 10 marked World Airway Defect Day and Donna is on a mission to educate healthcare workers and the community.
Bentley, two, and Leighton, eight-months-old, are the youngest of Donna’s four children and both have a condition where a section of the airway is made from soft tissue instead of firm cartledge.
Donna has also performed CPR to save Bentley’s life and seen his little body fade away as he failed to thrive.
“He used to use so many calories to breath it was hard to maintain a healthy weight.
“It’s awful doing CPR on your own child, and thankfully I haven’t had to do it for Leighton. He’s needed an airway sweep a few times when he chokes – he chokes a lot when food goes the wrong way,” she said.
Diagnosis and treatment
The road from diagnosis to treatment was slow with at first doctors reassuring her that Bentley, like most children with laryngomalacia, would grow out of it.
At six months old he had life-saving surgery at Lady Cilento Children’s Hospital. Just 5% of children with laryngomalacia have the condition so severely they require surgery.
It’s been a stressful time for Donna and Beau Hudson who is a big supporter of his sons.
“Bentley was two months old when he had first episode where he completely stopped breathing. I was feeding him and he just stopped breathing and looked to me like he was having a seizure.
“I was living in Moranbah at they went to intubate him, and once they opened up the airway with the laryngoscope to insert the airway tube he started breathing again.”
He went on to have surgery at six months of age to remove the damaged tissue. By this stage he was a fail to thrive baby, losing weight and losing interest in feeding.
“He stopped feeding because he couldn’t breathe properly and at one point got aspiration pneumonia because the milk went into his lungs.”
Donna remembers the toughest times were with her first baby, who had to be kept calm and cool all of the time.
“We couldn’t go in the heat or it would trigger him to stop breathing. He couldn’t even lay down flat to change his nappy for have a bottle. He’d stop breathing up to four times a day and I’d have to do CPR to get him breathing again
When Donna’s second son was born mother’s instinct told her he wasn’t breathing properly.
Leighton was diagnosed at four weeks old and fortunately his defect is slightly different to his big brothers and he has not stopped breathing.
“He has sleep apnoea at night so he uses oxygen overnight to keep him safe,” she said.
Laryngomalacia can also cause gastroesophageal reflux and swallowing dysfunction so a special bottle with a slow flowing tear is needed.
Any respiratory infection can also be horrific and result in hospitalisation.
Bentley is preparing for another operation at the end of the year to remove his tonsils and adenoids to make some more room in his small airway as ever millimetre of space opened up helps.
Mackay support group
Donna has started a Facebook support group for Mackay people affected with laryngomalacia or other airway disorders.
“I wanted to start something to help people out because in the beginning you know nothing and it can be hard to understand what the doctors are explaining. It’s good to hear from other families in the same situation.
Fortunately for Bentley his first surgery was a success, and he emerged from recovery with his stidor gone.
How you can help
Donna says innocent but hurtful comments have made these early years difficult as she makes an effort to socialise with the boys.
Bentley’s loud stridor breathing sounds prompted many unwanted comments from strangers.
“So many people used to say is he sick, does he have a cold, or I’d have parents leave a play date because they’d think I’d brought a sick child and they didn’t want their child to become unwell well.
“I’ve even a woman at the shop once offer to call an ambulance for him and I had to explain this was normal.”
Donna says she’s on a mission to raise awareness and encourages people to not be so judgemental if they see a mum with a child they think is unwell.
