Walking into the Emergency Department at the Perth Children’s Hospital with their sick two-year-old daughter Amelia, Brianna and Russell felt…
When Nick was born his parents Angela and Joe suspected something was wrong straight away. From the first time he was fed, Nick was constantly choking and vomiting.
They felt helpless and heartbroken as they watched Nick in distress, suffering one choking episode after another with no explanation as to why it was happening.
Seeing their child in pain and struggling to breathe each time he ate or drank was terrifying for Angela and Joe. They took him to Princess Margaret Hospital straight away in the hopes of finding an explanation and getting their boy the help he needed. His mum Angela explains,
It was a long battle of trying to find an answer, a reason for the distress that my little boy was in.
“After many tests, examinations and visits to PMH, the doctors finally confirmed that Nick has a laryngeal cleft.”
A laryngeal cleft is a rare condition where the larynx and esophagus are not connected properly. This means that when Nick eats and drinks the food and liquid could go into his lungs instead of his stomach, making it much more dangerous for Nick to enjoy a simple meal or drink.
While Angela and Joe were relieved to finally know why their little boy was choking and vomiting, it is still extremely stressful for them as they are constantly worried that Nick might choke.
Since his initial diagnosis Nick has become a regular visitor to Princess Margaret Hospital and now Perth Children’s Hospital.
“Nick has had a lot of throat operations in his seven short years. As well as his laryngeal cleft, doctors found that he has a floppy larynx and lots of extra skin folds in his airways which have caused breathing issues.”
“We also recently found out that Nick has chiari 1 malformation which means that some of his brain is coming out of his skull and into his spinal area. So far this hasn’t caused him any problems, and we are hoping that it never does,” explains Angela
“We are so grateful to all the staff at PCH who care for Nick, especially those in the ENT department that we visit so often. They are just amazing and we could never thank them enough for all the work they do.”
Their support and advice really makes us parents feel like we are not alone.
As well as regular hospital visits, Nick has to be very careful about what he eats to lessen his chances of choking. While he is not choking as often nowadays, it can still be very frightening for Nick and his family when he does have an episode.
“Despite all his breathing and throat issues, Nick is the chattiest little seven year old I know! He is always going up to new people and loves talking to everyone he meets about his favourite toys, games and school,” explains Angela.
“He definitely doesn’t let anything hold him back!”