Baby Charlotte's Life Journey

At 33 weeks Amanda went in for a routine ultrasound to check on the position of the placenta and the growth of Charlotte due to Amanda only having a two vessel cord. During this ultrasound it was discovered that Charlotte had stopped growing and was very tiny. Charlotte was only measuring at 28 weeks, 5 weeks under what she was ment to be. Amanda and Mick went straight to the hospital very concerned on what this ment for baby Charlotte. At the hospital Amanda and Mick were advised that they needed to get organised as Charlotte will be coming any day and they would more than likely need to go to Melbourne. Amanda was given a steroid to get Charlotte's lungs ready. Another ultrasound was organised for two days later on Thursday to confirm Charlotte's size. On Thursday 14th February 2019 Amanda and Mick went in for the ultrasound where it was confirmed that Charlotte had stopped growing. They went back to the hospital to figure out what would happen next. After two hours at the hospital a doctor came into the room and advised that Charlotte needed to be delivered via emergency cesarean. Filled with mixed emotions Amanda and Mick welcomed Charlotte Ann Noonan @ 6.15pm weighing only 1204g.  Charlotte was taken away and put on CPAP (oxygen) while the doctors prepared to have her transfered to Geelong. Michael was with Charlotte straight away while Amanda was in recovery. Charlotte was airlifted to Geelong 6 hours after she was born. Once in Geelong the doctors advised that a genetics test should be done to figure out why Charlotte stopped growing. After three and a half weeks and lots of ups and downs Charlotte was finally transfered back to wodonga on the 11th March 2019. Two days later on the 13th March 2019 Amanda and Mick's world was turned upside down. The genetics test came back revealing their worst nightmare, Charlotte was diagnosed with wolf-hirschhorn syndrome. A rare genetic condition which affects 1 in 50000. With wolf-hirschhorn being so rare it's hard to know what life will be like for Charlotte. What we do know is that Charlotte will have physical and intellectual disability, seizures, poor growth, feeding issues, immune deficiencies, dental and eye issues, low muscle tone, Charlotte will more than likely be non verbal and have difficulties walking. Charlotte is currently feeding mostly through the nasogastic tube and will eventually need to have surgery to have a Percutaneous endoscopic gastronomy (tube to her stomach). Charlotte will need continuous help from Physiotherapist, Occupation Therapist, Speech Therapist, Neurologist, Dietitians, Ophthalmologist and Dentists. Charlotte will also need medications, learning devices, walking aides, home and car modifications and much more as she grows. Please consider donating to Charlotte, her mum Amanda, her dad Mick, older brother Locky and older sister Aylah to help support the family with her life long battles.  Every bit will be a huge help!


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    • 14 mos
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    • 15 mos
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Organizer and beneficiary

Rebecca Sherrie Joyce 
Pine Lodge, VIC
Amanda Hulm 
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