A frantic mum has finally diagnosed her baby’s rare genetic condition after hours trawling Google.
“Don’t Google it!” has become a common warning where our health is concerned. If you haven’t strayed on to the internet with a slight sniffle and come away believing you are suffering from some bizarre and most likely outmoded illness than you are a more rational person than I am.
This week however parents of baby Ocea have announced that they eventually found the reason behind their daughter’s permanently protruding tongue not through their family doctor but actually with the help of Doctor Google.
Ocea, who was born in Cairns, Australia to Canadian mum, Melanie Varney (28) has now been diagnosed with Beckwith-Wiedemann Syndrome and has since received corrective surgery. Beckwith-Wiedemann Syndrome is described as an overgrowth disorder and in Ocea’s case her tongue is literally too large for her mouth.
Mum, Melanie described being able to see her daughter’s tongue in the womb:
“You could even see Ocea’s tongue sticking out on the ultrasound. I remember the technician saying ‘look how cute she is, she’s sticking her tongue out at you’.”
After her birth Melanie knew something was not right:
“The moment I gave birth to Ocea I thought she looked different to my other kids.”
“Obviously she had her tongue sticking out, but she was bigger than her sister. When we were out at the store we would get comments about her tongue poking out – most of them said she was cute but others thought she was being rude.”
“She was miserable with it – I would try and breastfeed her but she just couldn’t latch on. It kept me up all night either trying or worrying.”
According to the family, doctors believed it to be just a phase and so the concerned parents began their own investigation and found other babies who had similar issues. Once Ocea had received the diagnosis, she was able to undergo corrective surgery in Brisbane to reduce the size of her tongue which will improve feeding and eventually speech.
The family hope to raise awareness of the condition, to prevent other families from a similar ordeal.
Via Metro
