How little Chloe surprised her doctors
WHEN Vanessa Scott had her 20-week scan with her baby girl Chloe, she feared her daughter would not make it through the pregnancy.
The ultrasound showed that Chloe was going to be born small, but they were not given any explanation as to why.
For the remainder of her pregnancy, Vanessa had to have three scans a week to make sure her daughter was putting on weight.
On September 26, 2009, Chloe was born via c-section at only 30 weeks gestation. She weighed a tiny 420 grams.
"Chloe was so tiny but she was a fighter even from the day she was born," her mother said.
"When she came out the nurses tried to give her oxygen and she put up a fight because she didn't need it."
Chloe spent the first 70 days of her life in hospital. It was during that time she also had two blood transfusions.
When Chloe weighed 1.2kg, she was able to go home. Her parents then had to wait and see how their daughter would develop.
"The specialists told us that Chloe would have intellectual difficulties, would never crawl or do anything a normal baby would do," she said.
"After being home for six weeks we had a hearing test and that's when we found out she was profoundly deaf. We were still hopeful that she would be able to have a cochlear implant but that dream was shattered about a year-and-a-half later when we found out that her cochlear was malformed and she actually had no auditory nerves which meant there was nothing we could really do."
When Chloe was older, her family found out her legs, knees and feet had deformities and she would need corrective footwear. They were also told that Chloe would never be able to walk correctly.
But what Chloe did next not only surprised her family, but specialists as well.
"I don't think they realise how determined my little girl is as she started to do everything that the specialist said she would never do.
"Of course she was delayed in development but as she grew older she became more determined to do whatever she wanted and nothing could stop her. Last year around Mother's Day at the age of four-and-a-half, Chloe took her first steps and the look of satisfaction and happiness on her face is something I will never forget.
"I don't know how she manages to walk with her feet being so bad but she has found a way to do it and I couldn't be more proud of her.
"Now Chloe is walking and also running a little, mind you there are still a few stacks but she just picks herself up and keeps going."
Despite her strong efforts, Chloe will still need to have surgery on her ankles in the coming months to ensure they do not get worse.
"Chloe's surgeon advised me earlier this month that Chloe will have corrective surgery on both ankles in the next few months which involve putting a pin in the back of each ankle to stop them getting worse.
"He also advised that when she comes into adolescent years she will require reconstructive surgery on both shins and both feet as these are severely deformed and they need to break her bones to correct such deformities.
"This is going to be a major surgery and will see her in plaster for at least six weeks and also wheelchair bound for a while and in a lot of pain.
"It will take a while to get her back up on her feet but in the long run this is going to help her walk and run like any other child. It will be just a really hard and long road to get there but it will be worth it."
Chloe will also need ongoing dental and orthodontic work done as her jaw is too small for her new teeth that are coming through.
In 2014, Chloe went back to the Mater Hospital where she was born and was put on the Mater Research Team for unknown genetic disorders. In September 2015 doctors were finally able to give Chloe's parents a diagnosis.
"Chloe has been diagnosed with Warsaw Breakage Syndrome. This is a very rare syndrome with only five cases ever listed in medical literature so there isn't a lot of information out there in regard to this syndrome."
It is believed Chloe was the sixth person to be diagnosed with the condition.
Warsaw Breakage Syndrome can cause multiple abnormalities. People with Warsaw Breakage Syndrome have intellectual disabilities that can vary from mild to severe.
They also have impaired growth from birth, leading to short stature and a small head size.
Affected individuals have distinctive facial features that may include a small forehead, a short nose, a small lower jaw, a flat area between the nose and mouth and prominent cheeks. Other common features include hearing loss caused by nerve damage in the inner ear and heart malformations.
But no matter what, her mum is so proud of all the goals she has been kicking.
"I have definitely seen a massive change in Chloe since starting Prep this year. She is thriving with her signing and just has a willingness to learn and be the best that she can be," her mum said proudly.
"The outcome of these tests doesn't matter to me as Chloe is a beautiful little girl inside and out who is cheeky, bossy, smart and independent.
"She is always happy and full of energy and determination.
"She is one of a kind and I have never seen a child with so many struggles in life just embrace everything and is as happy and full of life as Chloe. Nothing will stop my little girl."
Seeing how hard the family is doing financially, the Lions Club of Logan South East has come on board to help.
Vice president Ted Jenkins said the club had been giving the Scott family funding for a number of years now to help cover some of the medical bills.
"We raise money throughout the year by hosting sausage sizzles and things like that so we can give back to the community," Mr Jenkins said.
"With little Chloe, she has had such a hard start to life and her mum cares for her, so we just knew we had to help.
"We get together every year and give her a cheque which will go towards her medication or maybe he special footwear."
Members from the club recently met with Vanessa and Chloe and proudly presented them with a cheque for approximately $1300.