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Being a TOF in intensive care for Lymm youngster
12:25pm Monday 21st October 2013 in News
BEING a TOF means something very different for one Lymm youngster.
Brave three-year-old Tilly Monks spent the majority of her first week of life in intensive care at Alder Hey hospital after being diagnosed with Tracheo-Oesophageal Fistula (TOF/OA).
The rare condition involves her windpipe and stomach pipe being joined which meant the first time mum Avene Furness tried to feed her daughter she was actually drowning her as milk went straight into her lungs.
Tiny tot Tilly now wears a badge to let people know about her condition if she starts to choke and has been raising awareness with her mum during a TOF campaign week.
Avene Furness, aged 34, said: “When I first tried to feed her she started frothing at the mouth and then she turned blue and had to be resucitated.
“It was terrifying and then they took her to neonatal and asked if I had taken any pictures of her.
“I didn’t realise how serious it was until we got to Alder Hey.”
After being diagnosed with TOF, Tilly had a five hour operation and spent two weeks in Alder Hey.
Her condition has also left her blind in her left eye with the requirement to wear a lense to stretch the socket until she is 18 as her left eye is smaller than the right.
Avene added: “For the first few months I was horrified this had happened.
“I found myself telling strangers what had happened to her because I felt like they could see her eye straight away.
“It took a long time to come to terms with it but we’re very open about it and she knows about her condition so she can explain and feel comfortable around others.
“She’s a lot better now than she was in the first two years where every five or six weeks she had chest infections.
“If I had another scan after 20 weeks it would have been picked up so I was scanned all the way through with my second baby Mason, aged six months.
“It’s one of those things you don’t know about unless it happens to you so we have been raising awareness taking cakes into Tilly’s step sister Scarlet’s school and Tilly’s ballet class.”
For more information about the TOFS national awareness week, visit tofs.org.co.uk.
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