When Lilly Munn was born, doctors knew something was wrong. Within two hours of birth she was rushed to Mater Children’s Hospital. She was diagnosed with Congenital Adrenal Hyperplasia, an inherited condition that affects hormone production and means that Lilly’s body does not produce enough salt. Roughly one in 10 000 people have the condition.
As well as the Congenital Adrenal Hyperplasia, doctors discovered that she had three holes in her heart and couldn’t feed normally because she had severe reflux, requiring a gastric nasal tube for feeding.
Lilly was treated with medicine for two of the holes in her heart so that they naturally closed over. She stayed in hospital for two months.
After many more visits to hospital, Lilly had surgery in March this year, on her first birthday. A special device was inserted in her heart to fix the third hole. This will most likely stay in her heart for the rest of her life.
Lilly is now 15 months old and has a full team of doctors and surgeons that monitor her condition. She has a very low immune system because of the Congenital Adrenal Hyperplasia and is very susceptible to infection. She is regularly hospitalised for vomiting and diarrhoea and even the most simple of colds is life threatening. Doctors have recently discovered that she also has a kidney stone.
The condition also means that Lilly requires a combination of medicines, blood tests and injections everyday. When she is older, Lilly will learn how to give herself the injections, as this is something she will require daily, for life.
“It’s really tough,” said Lilly’s mum Sherrilleee.
“I’ve got two healthy kids and was not prepared for the enormous rollercoaster that we would go on with Lilly. It’s hard to understand why one little girl has so many life threatening conditions.”
Despite all this, Lilly is a smiley, bubbly little girl.
“On the outside you’d think she was a normal healthy little girl. She is very brave,” said Sherrilleee.
“All the staff have just been so supportive. They have honestly saved her life more than once. Their care goes beyond that though, they always ask how we are and show a genuine interest in our family. We can’t thank them enough.”
“Lilly is our own Mater little miracle.”