IMAGINE your child being born unable to swallow and breathe for themselves.

It's a scary thought which can be caused by a congenital condition called tracheo-oesophageal fistula or TOF for short. This is the reality for the parents of one in every 3,500 babies born annually in the UK and the Thurrock family of Anna Hallett

Five years ago, Anna's son, Archie was born naturally but six weeks prematurely at Basildon Hospital with undiagnosed TOF. This condition can be seen during ultrasound scans during pregnancy from eight weeks of development but this was never picked up.

Within a few of hours of being born, Archie was rushed to The Royal London Hospital, Whitechapel for emergency surgery which was essential for his survival. 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 had to give Archie CPR as he stopped breathing when crying. After another long and gruelling hospital stay, a CT scan later found that Archie had severe tracheomalacia and was transferred to Great Ormond Street for emergency cardiac surgery, an aortopexy - this pinned his trachea (windpipe) to his breast bone. This has transformed Archie's life.

Anna says 'paediatric first aid training is vital for all parents, whether or not your child has a medical condition.' She says the journey can be an unpredictable one for all concerned and this is where the charity TOFs and its awareness week comes in. It starts this weekend.

The charity is celebrating its 40th anniversary this year- they mean so much to Anna and her family and have provided so much support - she is a TOF Local Contact (TLC) for the charity, providing voluntary support for parents in Essex & Kent who have children born with TOF/OA & adults living with TOF. Archie's fifth birthday fundraiser raised £315 for the charity.

TOF can affect the mental health both of the child and adult born with the condition as well as their parents. Imagine the trauma of feeding your child for the first time, only for them to choke and turn blue and be taken away by the medical team, desperately trying to help the newborn.

This is followed by at least one operation in the first week of life, time in ICU and years of negotiating their child's feeding, sleeping and health difficulties.

Some parents are left with PTSD because of their experiences around birth and depression, anxiety and isolation from the difficulties of raising a child with chronic health problems.

Archie was NG tube fed and had a CPAP machine to help him breathe for the first six months of life. He has been on anti-reflux medication all of his life as reflux is common for TOF children.

Lots of choking episodes, 999 calls, hospital admissions and by encouraging Archie to chew throughly, 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 but they're fortunate that Archie now lives a reasonably 'normal' life as a five year old. He started school last September and Anna says 'the school have provided so much support for both Archie and surrounding his medical needs and eating.'

In 2020 Nub News followed the fundraising efforts of Archie' uncle James, who had been motivated by his nephew's battle against his condition and the support received from the charity.