Archie's story highlights the work of children's charity and support network
A THURROCK mum has detailed the trauma her son and her son went through in the first years of his life as she seeks to highlight a charity's awareness week which began today (Monday, 26 February).
TOFS (Tracheo-Oesophageal Fistula Support) is a charity dedicated to improving the lives of all who are born with the TOF condition.
Imagine being unable to swallow anything? Imagine your child being born unable to swallow? It's a scary thought caused by congenital conditions called oesophageal atresia and/or tracheo-oesophageal fistula, or OA/TOF for short.
It's a reality for the parents of one in every 3,500 babies born annually in the UK.
Seven years ago, Anna Hallett's son, Archie was born naturally but six weeks premature at Basildon & Thurrock Hospital. After being told at a 29 week growth scan that he was a 'textbook baby,' she didn't expect her son to be born unable to breathe or swallow for himself.
Major surgery and specialised treatment at The Royal London Hospital, Whitechapel was essential for his survival and within a couple of hours of birth he was on his way to London with ANTS.
While some children born with these conditions experience relatively few problems (after the surgery), some are not so fortunate and can undergo numerous additional procedures throughout their childhood and into adulthood.
At seven months old, Anna, from Orsett, had to give Archie CPR as he stopped breathing when crying.
After another five weeks in hospital and a CT scan later, they found Archie had severe tracheomalacia and he was transferred to Great Ormond Street for emergency cardiac surgery, an aortopexy which pinned his trachea/windpipe to his sternum/breast bone.
This has transformed Archie's life.
Life-long follow up is absolutely essential as he 'may be fixed but never cured.'
The journey can be an unpredictable one for all concerned and this is where the charity. https://tofs.org.uk/tofs-awareness-week-2024/?
TOFS Awareness Week 2024 26 February – 3 March What's happening This year's TOFS Awareness Week runs from 26th February to the 3rd March. Can you help raise awareness of tofs.org.uk
The charity means so much to Anna and has provided so much support to her that she is a TOF Local Contact (TLC) for the charity, providing voluntary support for parents in Essex and Kent who have children born with TOF/OA & adults living with TOF.
"We have been supported by so many different teams both medically and educationally in order to enable Archie to lead a 'normal' life in London & Thurrock and I can't thank everyone enough for their support." Anna said.
"Archie was NG tube fed and had a CPAP machine to help him breathe for the first six months of life. He was taking anti-reflux medication until he was six as reflux is a common for TOF children."
"Lots of choking episodes, 999 calls, hospital admissions and by encouraging Archie to chew thoroughly, this has enabled him to begin to understand his condition. Some children live with food aversion and long-term eating issues due to their condition."
"The charity rely on donations to operate and to date, we, as a family, have raised over £1000 for TOFs through fundraising projects & events."
Anna hopes that the awareness week will raise the profile of the charity, enabling it to do more to help youngsters like Archie and their families.
Anna concluded: "We are fortunate that Archie now lives a 'normal' life as a seven year old; playing football twice a week for local team, Grays Athletic U7s, has weekly swimming lessons and eats loads.
"Archie is becoming more aware of the condition; how he feels and the troubles he may face as he gets older. We remain forever grateful to TOFS and to everyone for all of the medical and moral support we have received and continue to receive."
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