News

Welcome to our new TLC’s!

Published: Tue, 24th March 2020, 04:43:00 PM

Fantastic news, more TOFS’ local contacts (TLCs) to support you in your area!

 

Our TLCs are a small group of volunteer members, all parents, with experience of caring for a TOF child on a day-to-day basis. Spread across the UK, TLCs are available to listen, talk and offer support to new TOF parents, organise local informal get togethers, and take posters and leaflets into hospitals, especially where TOF surgery takes place. Some TLCs have shown further commitment by giving talks on behalf of TOFS and others are available to visit hospitals to support parents.

Our TLCs are themselves offered information on basic listening and counselling and are given support from both the TOFS office and a Trustee.

Anna Hallett, TLC for Kent and Essex

Anna is mum to three year old TOF son, Archie and lives in Essex. Archie was born at Basildon Hospital in February 2017, weighing 5lb 6oz at 34+3 with OA/TOF, which wasn't identified until he was born. Within four hours, they were transferred to The Royal London Hospital, Whitechapel for his repair. Archie has had 2 oesophageal dilations to date, at 6 and 12 weeks old. He came home after a month and was NG fed & on CPAP for naps and at night until he was five months old due to his floppy airway which they were told would get stronger. In August 2017, Anna gave Archie CPR and knew from then on something wasn't right- after six weeks in hospital and a CT scan, Archie went to Great Ormond Street Hospital for an emergency aortopexy. Since this operation, apart from reflux sometimes causing issues, Archie is an outgoing & enthusiastic little boy.

 

 

Laura Bell, TLC for Kent and Sussex

Laura is an artist and mother to Elliot, aged three and Orla, just two months old. Elliot was born with VACTERL but OA/TOF, anal atresia and urinary problems have the most impact on his daily life Laura says:

‘ Before Elliot was born I had very little medical knowledge, then this amazing little boy entered my life and introduced me to a whole new world of hospitals, medical terminology and all sorts of procedures and daily cares.’

Becky Panting, TLC for Leicester

Becky is a part-time charity worker in Leicester and mum to Thomas, born in 2018. After a lovely pregnancy with no complications until the very end, Thomas arrived via emergency c-section and within a couple of hours was diagnosed with TOF/OA. He was repaired on day one and had two stretches within the first 3 months. He has suffered with reflux and had several choking episodes resulting in hospital visits, although thankfully the last admission was over a year ago and in the last few months he's suddenly started to be able to eat almost normally for the first time! Although medically speaking Thomas has had a simpler journey than many children with TOF/OA, the emotional journey has and continues to be quite significant for their family, which Becky hopes will enable her to be able to support other parents in these early years, regardless of differences in medical facts.

 

 

 

Cara Macdonald, TLC for Norwich & Norfolk

Cara is mum to Barnaby 11 and Ted 13 and lives in Norwich with husband Duncan.  Barnaby was born with Long Gap OA and had a repair at three months old but then went on the have a resection at age three. In-between those he had x2 Nissen’s and an array of treatments and procedures! Cara is really looking forward to helping support families in her area.

Claire Stewart, TLC for the North East (Northumberland)

Claire is mum to TOF Jack, who is now 18, and his younger brother Charlie, who is 12 and born completely healthy.  Anna had no idea during pregnancy that there were any complications, although she did suffer from bad swelling, but nothing was picked up by midwife or doctor.  When Jack was born, the midwife noticed he was in distress and they quickly took him away to be cared for.  Unfortunately this meant that she didn't get to hold Jack for some weeks and this was the beginning of a very traumatic journey for both Anna and her husband.  Jack is VACTERL, with long gap OA/TOF and Tetralogy of Fallot being his two main issues. He had his TOF repair done the day after birth and experienced many complications along the way. Once home, Jack experienced severe feeding issues, reflux and vomiting not as well as bowel and heart problems, which pretty much meant 24 hour care. Due to ongoing reflux and swallowing problems, Jack had a Nissen Fundoplication at around 8 years old, which was successful and despite episodes of reflux and vomiting throughout his life he has miraculously never needed a stretch and now eats pretty normally - despite tube feeding as a baby and being very delayed in eating any kind of solid food. Anna's family have had very little support for Jack or themselves throughout his childhood and is well aware of how difficult things can be, not just with their physical health, but also the significant emotional and psychological toll it can take on both the child and family members.  It is because of this this that she hopes to offer some support to other parents and families.  

Rebecca Golding, TLC for South-East London and Surrey 

Becky is mum to Isabelle, who is almost two, and her younger brother William who is five months old, and has additional medical needs of his own.  Izzy had her repair at Evalina at two days old.  The surgery took six hours, and they later found out that she had been born with a previously unseen type of TOF – 'Type Y'.  Mr Yardley's team at Evelina have since written a paper about it which was published in the British Medical Journal last year.  Izzy has mild tracheomalacia which has improved with time, an unsafe swallow and severe dysmotility.  This combination led to recurrent chest infections and lots of hospital stays in her first year, so she had a PEG fitted in 2019 which was then changed to a mini button three months later.  She has also had two stretches, and these were combined with the feeding tube surgeries. 

 

 

 

Trudi Saunders, TLC for Southampton

Trudi is mum to Peter,  born in 2012. Peter was born at 29 weeks unexpectedly with long gap OA and TOF. He spent a year with a gastrostomy and an oesophagostomy before undergoing gastric pull-up surgery to join the gap when he was one. Since then he's had numerous issues with feeding and oral aversion, he also has failure to thrive. Peter, now 7, eats so much though he is still sensitive to textures but is a happy boy and is enjoying school and playing with his friends like anyone else his age.

 

 

 

Tracey Fish, TLC for Southampton

Tracey is mum to son James, born in 2013 with vACTERl.  James is a TOF with a short gap OA (he was repaired as a short gap OA, although the surgeons did have lengthy discussions on if he was a long or short gap, and later revealed they should have treated him as a long gap). James was successfully at school until the recent Covid-19 issue. Tracey is also mum to 4 year old Eleanor.

Introducing our latest additions to our team…

Rebecca Crofts, TLC for Yorkshire

Rebecca is mum to Cassie aged four and Bobby aged three. Bobby was born with long-gap OA/TOF, repaired at three months. He required numerous stretches and had tracheomalacia, requiring an aortopexy. They live with Daddy and their dog Barkley in Sheffield and are a busy family unit, working hard and juggling life, but playing lots too.

 

 

Naomi Webborn, TLC for Wales

Naomi is a mum of three children aged nine, three and eleven months. Her eldest, George, was born with OA/TOF. George was diagnosed at birth and taken straight to UHW in Cardiffwhere he was operated on at two days old and had a dilatation at around seven months old. He has had lots of hospital visits and stays with tracheomalacia, stridors and bronchitis over the years, as well as many barium swallows.

 

 

Claire Burnside, TLC for Northern Ireland

Claire is mum to Olivia, 13 years old, who was born with long-gap oesophageal atresia and a bicuspid aortic valve. She spent the first nine months of her life in the Royal Belfast Hospital for Sick Children as she was unable to have her repair surgery until she was five months old and then became very unstable with reflux. Olivia had a fundoplication at seven months old.

 

 

 

 

Kim Birkett, TLC for Glasgow & Scottish Borders

Kim is mum to two girls aged 22 and 18, and Spike, her 16-year-old reoccurring H-type TOF.  Spike was diagnosed at 14 days old after getting transferred to Alder Hey Children’s Hospital. After initial good progress, Spike left hospital 8 days after his first operation, however due to recurrent chest infections and weight loss he was readmitted to hospital where it was found that his H-Type TOF had rejoined. After another operation, a gastrostomy, tracheostomy and a long stay in hospital Spike was discharged and he was expected to have no exercise tolerance at all in the furture. Moving forward 16 years, Spike plays rugby league for Scotland, rugby union for his local team and is fit and well, although still not a big eater!

TOFS is incredibly reliant on the expertise and skills of our volunteers and we need more! If you are interested in getting involved please email us at info@tofs.org.uk

 

We are recruiting in the following areas: Aberdeen, Hull, Birmingham, Oxford and Londonderry, Northern Ireland

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