tofs Autumn 2011

chewSupport for families of children born unable to swallowTOFS (Tracheo-Oesophageal Fistula Support), the charity that supports families of children with Tracheo-Oesophageal Fistula and associated conditions

Pictured: Happy snappy! Young TOF Oliver enjoys alittle time in the paddling pool at home! Read his storyon p2.

Inside� Last chance to book for the

2011 TOFS Conference!� TOF mum does online survey� TOFS at BAPS� Family and adult TOF news

...and much more!

Have you updated TOFS with your latest mobile phone number and email address?

Please do to help us stay up to date!

From the editor...Welcome to your autumn2011 issue of Chew!

We hope that your autumn hasstarted well. Ours is set to be verybusy, with our next children’sconference just around the cornerand plenty of other events planned!See inside for more details. Also inthis issue, read up on a study and asurvey both focusing on TOF - andget up to date with adventures at theNewbury Racecourse!

Thank you for your continuedsupport and for sending in all yournews. Please keep your storiescoming in (photos in digital formatplease!).We look forward to hearingfrom you soon!

Camilla Zajac, Chew Editor

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WELCOMEA warm welcome to our new members!� Keri Patton and Philip Harris from Co. Down - Blake born 06/07/10� Lisa and Andy Malcolm from Worthing - Joel born 19/01/11� Tina and David Perry from Isleworth - Luca born 19/03/11� Kelly Doig from Dundee - Sam born 12/05/11� Sharlene Di-Giosaffatte and Christian Gratte from Australia - Coopah

born 08/06/10� Anna Sos and Norbert Zsiros from Hungary - Lili Kamilla born 09/08/11� Valentina and Willem Heskes from London - Loli born 06/12/11� Sarah Hesse from London - Rameses born 08/03/09� Inez and Francis McPadden from Co. Leitrim - Daniel born 25/06/11� Hayley Allen and Daniel Sidwell from Fareham - Jamie born 21/04/10� Ayten Bekem and Huseyin Akpinar from London - Sila born 13/07/11� Betsan & Andrew Howells from Llanelli - Mared born 06/10/10� Christina & Stephen Wilson from Wigan - Ella born 18/06/10� Victoria and Andrew Eade from Surrey - Thomas born 01/03/11� Barbara Gamble from Belfast - Susanna born 07/06/11� Sharon Doleman from Droitwich Spa - Grandparent to child born with TOF

Cover story: Oliver CobdenOur smiley cover photo is of young Oliver Cobden.His mum, Cath, recently shared his story with us:

Oliver was born on 14 July 2009 at 38 weeks weighing ahealthy 3.44 kilos. We have just celebrated his secondbirthday. We were told we were having a baby boy and hewould be a little brother for our three other gorgeous childrenBen, Elliott and Amy.

Not long after he was born, we were told that Oliver did havea pure long-gap oesophageal atresia without a fistula and hewould most probably spend several months in hospital beforeundergoing surgery in a few months time! The followingmorning he was taken into theatre for his gastrostomy (Pleasesee glossary on p11) to be inserted, but was back in intensivecare before lunchtime for our first proper visit.

He spent five days in intensive care in the Trevor MannBaby Unit before being transferred to the Royal AlexandraChildren’s Hospital (our second home) to begin thejourney of making him big and strong enough for hissurgery.

Oliver’s surgery took seven hours! He was transferred backto Trevor Mann for intensive care and three days later, wastransferred back to “The Alex” to recover and start the processof feeding! Oliver was back in hospital every two weeks fordilatations (see glossary on p11). In February 2010 he startedto vomit after every feed and just wasn’t the same settled babyhe had been, so after a visit from my health visitor I took himback to “The Alex” where they admitted him with a chestinfection caused by reflux and aspiration. His surgeon came tosee us and said he would need a Fundoplication operation verysoon.

He is now a two year old cheeky, but very happy toddler and hisdilatations are now 10 -12 weeks apart. He is still on hismedicines. The ‘terrible twos’ have certainly started, but wecan’t help letting him get away with the small things as he isso precious.

I was very honoured recently to be asked to become a volunteerevent organiser for TOFS in the West Sussex area and I am pleasedto announce I have organised a TOFS Children’s party for 12November 2011. We have booked “Robbie the Magician” as anentertainer for the children and Oliver’s surgeon and registrars willbe delivering a talk on TOF and holding a question and answersession afterwards (See events page on p6 for full details). Ipersonally would love to meet other TOF families and share all ourstories!

I would like to end by saying that we have received - and stillreceive - the most amazing support from all the surgeons, doctors,nurses and staff at The Royal Alexandra Children’s Hospital, TOFS,community nurses, health visitors, dieticians and especially ourfamilies and friends and we would like to take this opportunity tothank them all from thebottom of our hearts.

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TOF mum does online surveyTOF mum and academic Dr Martina Meincken recentlycarried out a survey using our very own TOFS Facebookpage. (See some of the results represented on the right.) DrMeincken had followed posts on the TOFS communityforum and the TOFS Facebook page and recognised howmuch she had in common with other mums. She says "Ijust wanted to find out how far those commonalitiesreally went - pure curiosity, no scientific interest".

Martina asked members of the TOF Facebook group tocomplete her online survey in July 2011; she had 85 responses,indeed some of you may well have taken part. As weunderstand it, the point was to try to see if - amongst the TOFonline community - mother's "lifestyle" factors might beassociated with TOF babies. As Martina says, her survey resultsare in line with most of the medical literature - there does notseem to be a connection. The survey also found, amongstother things, that 48% of the respondents' TOF babies werepremature. Martina's complete write-up is available online, asnoted below. Obviously Martina's survey is not a perfectscientific study - the respondents were not randomly selected,for a start. But it is, at minimum, a useful illustration.

Find out more about Dr Meincken's personal experience ofTOF below.

Dr Martina Meincken writesfrom South Africa:I am originally from Germany and after my MSc in physics, Iwent for a six-month internship to South Africa. That was in1998 and I am still here. After a PhD in Polymer Science, I amnow working in the Department of Forest and Wood Science,teaching physics and bioenergy. I got married to a SouthAfrican German and now have two girls, Rebecca (now three)and Alexandra (pictured below) who was born on September11 2010, 4 weeks premature with TOF/OA and slight analdeformations. They immediately sent us to a bigger hospitalin Cape Town, where she was treated by the specialists - andthey really did an amazing job! Alexandra started eating babyfood at four months and now at 11 months, she is desperateto eat what we eat. She has been going to crèche since shewas four months old and she loves playing with the other kids.Although she is rather small, she is quite a tomboy.

first second third fourth twin0

10

20

30

40

50

%

My TOF child was the

<30 30-35 35-40 >400

10

20

30

40

%

Mothers age at birth

smokingalcohol

hard worknormal

extrahealthy

stressed

don't remember

0

10

20

30

40

50

60

70

80

%

Lifestyle

normal slightly overweight overweight0

10

20

30

40

50

%

Mother's weight

Good mix meaty vegetarian0

20

40

60

80

%

Mother's diet

In all the charts above, the vertical axis is showingthe % of respondents who gave the answershown.

To view the full survey, please go to:http://www.4shared.com/document/p6Db3-qJ/TOF_Survey_2011.html

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Family updates and newsBreathlessness and other issues:Can you help?We recently heard from TOF parents Nasreen andNicky Hussain who live in Hammersmith. They wereconcerned about a recent change in their child andwanted to know if any other TOF parents had had asimilar experience. If you have and would like to letNasreen and Nicky know, please contact them via theTOFS Office.

Our son, Abdur Rahman is eight years old and was born withTOF and OA. He had a Nissens (see glossary on p11) at 18months old. Abdur Rahman is eight now and still under-weight, but other than that he is full of life and always smiling.He came 3rd in the beanbag race for schools sports day.I wouldn't change him for anything.

Recently, Abdur Rahman had his tonsils taken out. I havenoticed that he has started to get very breathless whilsttalking and takes very deep breaths during conversations. Healso has started to drink a lot more during mealtimes andthroughout the day. I'm not sure if this is normal and wonderif there could be a reason for this? Has anyone else noticed thisin their child? If so, please let me know.

We are members of TOFS and we love getting the newslettersthrough the post. The charity and the website was one of thebest things I discovered when Abdur Rahman was a baby. I hadnever heard of TOF and watching him going through refluxand all the eating issues was really tough. Reading otherpeople’s stories and experiences helped me get through thefirst three years. I remember reading other parents’ commentsand they said “Stay strong there is a light at the end of thetunnel.” - and there is.

A very specialgranddaughterPhoebe is the granddaughter of TOFS Trustee DennisHarvey. Born with TOF/OA and now aged nearly 12,Phoebe recently moved back to the UK from Brazil withher family. Due to start secondary school very soon,Phoebe is already an accomplished skier, swimmer andpianist! Here she is having fun with her brothers Felixand Ollie and her granddad!

Maxine Pollock writes from Coventry:

Eden has been ill for almost eight weeks now with a constantbad chest. She now has a nebuliser machine at home so thathelps a little, but it seems to be never-ending.

A few months ago,Edenʼs brother andsisters decided todo a sponsoredswim to raise moneyfor TOFS. Cora, Benand Lexie swamnon-stop for an hourto raise money.

They went around tofamily and friends toget sponsors andraised a totalamount of £800 forTOFS which theywere delighted with.We are so veryproud of them fortheir efforts and their interest in Edenʼs condition. We wanted toraise money for TOFS who we all respect for always being thereto help families who are affected by the condition.

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Don’t miss out on your final chance to join us at our conferenceon Saturday 15 October!

Simply complete and send in this booking form today.

Please list below the names of members and

friends attending

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............................................................................

Number of delegates @£20 per person: ............

Total: ............

Please list below bbooookkiinngg ccoonnttaacctt information

Name:

..........................................................................

Address:

............................................................................

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............................................................................

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Email: ..................................................................

Phone: .................................................................

Please complete this section only if crèche

facilities are required. List below names of

children up to 10 years requiring a crèche place

during the Conference - note numbers are limited

(NB please include any relevant medical

information on separate sheet).

£10 (first child), £7.50 (second child) £7.50 (third child)

Name: ………………………...........................…......

Age……………….. £10

Name : ……………............................…………........

Age…………….…. £7.50

Name:…………………………………………..............

Age……………….. £7.50

Total enclosed- please make cheque payable

to TOFS (Delegate cost + crèche, if applicable)

£...........................................................................

Workshops are subject to demand - Please tick which ones you'd like to attend:

Genetics

Transition from Paediatric to Adult Care

Feeding the TOF Child

Early Positioning & Movement Experience. (How to deal with the world.)

Please let us know if you have any special needs for the conference (eg wheelchair access), and, if you arebringing children, please let us know the sorts of foods they can eat:.....................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................

If you have any objection to photos being used in CHEW or on our website please indicate:.................................................................................................................................................................

Please list below any questions you would like answered by our medical panel (continue on a separatesheet if necessary)............................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................

� 5Last chance to book for 2011 TOFS Conference!

TOFS EventsTo book your place on any of our events,please call us now on 0115 961 3092 or email:info@tofs.org.uk. You can find more detailsof events at: www.tofs.org.uk/index.php/tofs_events/dates_for_your_diary

2011 TOFS Conference, Saturday 15 October,Holiday Inn, Birmingham M6, Jct 7Last chance to book! Fill in the form on p5 and sendit back to us today!

TOF Adult Get-together, Thursday 15September from 5.30 - 9pm, Worcestershire’sHidden Garden at Bodenham Arboretum andVisitor Centre.With a supper subsidised by TOFS for the TOF adultsand teenagers (partners/additional family members topay for themselves, please). If you decide to make aday of it, you could visit the Arboretum and join usfor supper.

TOFS Family Day in North-West of England,Sunday 18 September 2011 1-3pm, HolySouls Church Hall, Blackburn, Lancashire. Magician, balloon-modelling and disco for the kids!All TOF families invited.

TOFS children’s party, Saturday 12thNovember 2.30-5.30pm, BrightonThe fantastic entertainer Robbie the Magician will bein attendance. This is the ideal opportunity to meetother TOF families. Consultant Paediatric andNeonatal Surgeon Miss Anouk Van Der Avoirt andsome of her team will be there to talk about TOF andanswer questions.

2012 EVENTS

Family Fun Afternoon, Saturday 28 April,Coram’s FieldsStill some time away, but numbers are limited, soplease register your interest today.

Live in Northern Ireland?We’re hoping to hold an event in Northern Ireland inearly spring 2012. We have a limited number ofmembers living in the Northern Ireland so we needyou to register your interest now to make sure thishappens.

TOFS Council of Management meetings

Sunday 18 SeptemberSt George’s Centre, Netherfield, Nottingham9.30am - 12.30pm

Sunday 20 NovemberTeleconference, 10.30am - 12pm

Newbury Family Fun Day - 31 JulyBy John Pearce, TOFS Trustee

The sun shone for TOFSmembers at NewburyRacecourse - and thatmade for a great day outfor a large group fromTOFS. The racecourse hadkindly invited TOFSmembers along to takepart in its annual “FamilyFun Day” - a day of racingwith many child-friendlyactivities thrown in. Theracecourse very generouslyoffered free tickets forTOFS members and alsomade a “pavilion” spaceavailable for TOFS.

Noddy, Paddington and Harry the HorseIn addition to the usual horse races, there were two pony races, with childrenas jockeys. During the afternoon, children’s’ favourites such as Noddy,Paddington and local favourite Harry the Horse appeared. There were alsobouncy castles, face painters, and other attractions.

Famous author, our very own Sophie Smallwood, was selling signed copies ofher most recent Noddy book (proceeds to TOFS), with a little part-time helpfrom Noddy himself. Sophie and Noddy have featured in stories and photosin at least one of the local newspapers since then.

On the day, we made full use of the racecourse’ssuperb hospitality: some 22 TOF familiesattended, or about 87 people in all, making this amajor event for TOFS. Most of our TOFS wereyounger children, as we might expect at this kindof event. However we also had a handful of TOFteenagers there and three adult TOFs.

A good time was had by allTOF mum Tracey Thomson said: “A big thank you for the race day, we had thebest time”. The Poole family told us: “Thank you for an enjoyable day and weare pleased that we were able to 'shake the buckets' and help support TOFS”.The Thompsons said: “We all had a wonderful day and it was nice meeting upwith some of the other families”. Andy Roud said: “We feel any little we cando to help a charity that was there for us at such a difficult period in our lifeis time well spent . Keep up the good work and we look forward to the nextTOFS event."

But this wasn’t just a great day out. TOFS was the official “Charity of the Day”.The racecourse had ensured that TOFS was highlighted in the racingprogramme for the day, and it also persuaded the Tote to invite Sophie tomake a celebrity bet, with winnings to TOFS.

Towards the end of the afternoon, TOFS members donned TOFS T-Shirts and,buckets in hand, collected donations from racegoers as they left the course.

A winning day for TOFSBetween us we did very well indeed. Ian Thompson winsthe honours as biggest collector - his bucket had some£289 in it! Others who did very well included the Pooleand Dale-Ellis families with a joint £276, Veronica Radford£171, the Rolfe family £115, and Andy Roud andChristine Rafferty and family who collected £102.

The total we raised, including sales of the Noddy book andthe celebrity bet, was nearly £2500. A fantastic result, farmore than we had imagined could be possible. And theremay be another big donation to come yet.

So a very successful day for TOFS, both financially andsocially. Huge thanks are due to the team at theracecourse: Kate Walthew, Nicky Hares, and especiallyHead of Sales, Nicola Butler, who is a good friend of TOFmum Amy Fox.

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A true team TOFS effort at Newbury Racecourse!

Sophie Smallwoodgees up thefundraising withher Noddy book!

Someone who inspires meWhat a write-up! Here’s what eleven yearold TOF Charlie Gough had to say about hismum, Alison Gough, in a writing exercise atschool. (Read more about Charlie and hismum on the right)

Everyone has a mother but mine is the best in the worldbecause...my mom inspires me because of the effort sheputs in every day to raise me up to be a good child whotries his hardest in everything he does. Some days shegoes out and studies at college and every time she goes,she is one step closer to qualifying as a nurse. I love theway she never gives up on herself and just tries harderand works her way slowly and efficiently to the nextlevel. She helps me push myself to the limits and to bethe best I can. She also helps me with my homework andresearch I have to complete.

Bless her soul, she always has a tea-towel hanging out ofher pocket like a tail because she is always washing upevery night after dinner. Me and my sister dry up theplates and pots and whatever is on the drying rack. Ienjoy spending time on my own with her and I canremember one time we went out and she still had thetail on and we got out of the car (Jupiter jag as momcalls him!). I remember laughing my head off then toldher so she put it back in the car! She (and my dad!)saved up for four years to take us all to Australia to seeour auntie and uncle (Dee and Paul). Thanks mom anddad!

Mom is hardworking like the athlete Usain Bolt! Notforgetting to mention that she adores books. Herfavourite author is Jodi Picoult - she has the name of herfavourite book tattooed on her foot. Some weeks shewill go down to study at my Nan and Grandad’s house,because at home it is too noisy because of three childrenand a basset hound called Toby who is constantlynibbling at her college books!

When me and my mom went in my Uncle Paul’sinflatable kayak in Australia, at swan river she knows Idon’t like jellyfish, but there were lots in the water, butI was safe inside the kayak (at least that’s what Ithought). She kept on scooping them up with thepaddle and I don’t think I’d ever screamed that loud everbefore in my entire life. I forced her to take me back toshore where I could enjoy a nice refreshing sodastream(by far the best drink in the world!). My mom can’t cookscrambled eggs because they always turn out like asandcastle, but as I said she tries her best in everything.Her favourite saying is “There’s no such word as can’t.”

To round things up, my mom is a hard working optimistwho always tries her best in everything she does andsecretly enjoys a glass of red wine and television on anevening!

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Smiley faces and rainbows

Thank you to Charlie’s mum, who sent us amoving account of the first days of Charlie’sbirth. We share an edited version here:

One question ran through my mind...I stood lifeless, like acold stone statue, paralysed by fear, frozen to the centre ofthe intensive care ward, unable to move. The question“Why wouldn’t they let me keep him, dad?”, the dateFriday 14 May 1999, the time I do not recall. Charlie, myson, had been born four days earlier on a beautiful sunnyTuesday morning.”Tuesday’s child is full of grace,” themidwife sang out, as I arrived onto the labour ward. Yetthere I stood four painful, life changing days later, in theICU ward in the children’s hospital.

Now, when I look at my eleven year old son I feel trulyblessed for how much he has taught me about the abilityto strive and achieve against all the odds. On the numerousoccasions he has encountered surgery and medicalprocedures, bravery surfaces in him beyond what we wouldexpect. He enriches my live daily and for that I will beeternally grateful. As a family we are always grateful to theprofessionals who have worked their magic on Charlie andcontinue to do so, from the highly skilled surgeons to thehospital porters and cleaners, they all play an important rolein keeping Charlie well. As a family, we have grown uptogether. Charlie is now a great big brother to Julianna andFreddie and I thank God for them every day. My proudestachievement in my life is my family. We are strong, resilientand solid and as a family unit we will embark on the restof Charlie’s journey together from predicted heart andspinal surgery to all the teenager protests, girlfriends,exams, and whatever else life throws at us.

We’re still not on the home straight yet, but we have turneda few more corners, some harder to manoeuvre thanothers, but with Charlie in the driving seat it will be aguaranteed adventure. I look back at the time in the ITUward eleven years ago with mixed emotions. I have alwayswondered how to describe the best and worst day of my lifeon one page, but my saviour at the hospital, Jean the nursewho wore the smiley faces and rainbow apron, summed itup perfectly at the time: “My wee lad is just grand”.

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This year, the British Association of Paediatric Surgeonshosted their annual congress in Belfast, Northern Ireland.We are very grateful to the organisers for allowing us tohave a stand at the associated exhibition free of charge.We took advantage of cheap flights and budgetaccommodation to attend the exhibition to remindpaediatric surgeons that our group exists and, hopefully,for them to tell their patients.

This is the second consecutive year that TOFS haveattended the BAPS Congress and we were made mostwelcome by the organiser (Dr Clare Rees of BAPS) andalso by many of the BAPS representatives, including theirPresident, our very own patron, Mr Gordon MacKinlay,and Mr David Drake and Hon Secretary/Treasurer, Mr IanSugarman.

The paediatric surgeons as a group have more contactwith TOFs than almost any other group of medicalprofessionals, and the BAPS Congress offers us avaluable opportunity to meet so many of them underone roof. Most of our patrons are paediatric surgeons,and several of them come along to the stand to sayhello.

BAPS allowed us space in their exhibition hall where wehad a panoramic view of Belfast and we attracted plentyof attention from the 300 surgeons who wereattending from the UK and overseas.

We reported last year on a paper which had beenpresented on a year-long study of current UK practicefor treatment of newborn TOFS, and the authors of thispaper are currently doing a one-year-old follow up studyso we look forward to reporting on the results of this ina future edition of Chew.

This year one of the studies focused on thedevelopmental outcomes of TOF/OA children versushealthy control infants. This paper was presented byKaren Walker of The Children’s Hospital at Westmead,Sydney, Australia. Read more about the report on thispage.

Can you help us raise our profile?Can you see a TOF poster anywhere when you go tohospital for check-ups? Please let us know whether youdo or don’t by emailing us at: info@tofs.org.uk

at Baps tofs Early developmental outcome following surgery for OesophagealAtresia By Dr Karen Walker, Dr Robert Halliday, ProfNadia Badawi, Prof Andrew Holland. GraceCentre for Newborn Care, The Children’sHospital at Westmead, Sydney, Australia

Traditionally research has focused on improving survivaland the long term medical issues surrounding infantswith oesophageal atresia +/- tracheo-oesophagealfistula OA+/TOF). With the increasing survival of theseinfants, however, attention is now focusing on whathappens next and in particular their development.

Our group in Sydney, Australia aimed to determine theearly developmental outcomes of infants with OA/TOF.We compared developmental outcome at one year ofage of 32 infants with OA/TOF, comparing them with agroup of 233 healthy control infants. The children wereassessed using the developmental assessment, theBayley Scales of Infant & Toddler Development (Version-III).This assessment has five subscales; cognition,receptive and expressive language, gross and fine motor.We assessed the children on each of these scales.

At one year of age, we found no difference in cognitivedelay between the two groups with both groups havinga low 3% of children delayed. In receptive language(understanding what is said), 25% of children with OAwere delayed compared with 11% of the control infantsand in expressive language (what the children said), 19%of children were delayed compared with 10% of controlinfants. With fine motor skills we found 13% of infantswith OA were delayed compared with 9% of controls.The greatest delay we found was in gross motor skills,where 42% of infants were delayed compared with 18%of controls.

Although there was increased delay in infants withOA/TOF, by far the majority of delay was mild and wouldlikely be amenable to early intervention. Only one infantwas found to have severe delay in gross motor, threehaving moderate delay in gross motor and onemoderate delay in expressive language.

Identifying delay at the earliest possibility enablesintervention which may ultimately improve the outcomefor the child and their families. With the results of thisstudy, at the Children’s Hospital at Westmead in Sydney,we have now enrolled all infants with OA/TOF into ourdevelopmental follow-up clinics which will ensure thatwe provide the optimum care for these infants and theirfamilies.

by Diane Stephens, TOFS office manager

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Donations and fundraisingFor ongoing support we’d like to thank:

A first for TOFS

If there’s one thing more daunting than taking partin a marathon, it’s taking part in a marathon forthe very first time! So we were very impressed tohear about Julie Haley’s recent success in theEdinburgh Marathon (pictured below). Julie bravedthe event after being inspired by Kay Leech, mum toHarriet, who was born with TOF/OA. We aredelighted to say that this marathon effort has led to£165 being raised to date! Congratulations, Julie!

� Ian Smith, father to Matthew born with

VACTERL - £703 raised to date by completing

the Edinburgh Half Marathon � Aircraftsman Mr R M Rees-Prichett, (uncle to

child born with TOF), and other students from

the Royal Air Force School of Administration -

£72.50 raised by holding a charity pub quiz.� Form 8GB Dover Grammar School for Girls -

£76.13 raised by holding a teachers’ Karaoke

event. � Rosie Harrington - £105 raised by organising

a concert for her private pupils (one of her

pupils is Tracey Waite born with TOF) � Astley Sports College & Community High

School - £466.97 raised by holding a non-

uniform day and staff donating to a

charity Christmas bulletin.� The Tadley Tigers Rugby Football Club -

£643.50. The Tigers very generously gave

TOFS half of the sum they raised at the recent

Newbury races family fun day.

In loving memory of Graham Fox:

Lodge Brothers Funerals Ltd - £325 in lieu offlowers at the funeral of the late Mr Graham Fox,Uncle to Gabriella Fox (born with VACTERL). ToddSpeakman - £168.50 raised by holding a charitynight in memory of Graham Fox, who was his closefriend and mentor.

200 Club Winners:June - Fiona EvansJuly - Majella O’MahonyAugust - Christine Churchward

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pancreas and I was diagnosed with dumping syndromeat the age of 29. I’ve also been diagnosed with irondeficiency anaemia and fibromyalgia. I did have a lot ofupset during my school years as I was so very small andfelt different to others. I think a lot of my problems werepsychological as I felt more comfortable being in hospital. I must say that I have some lovely memories ofbeing in hospital. The nurses used to make mestrawberry shakes from ice cream and would let me weara nurse hat so I could pretend to be like them.

I do feel as an adult that I was forgotten about once Ireached 18 years and have often felt very angry whendoctors have had no idea how to treat me. When I leftschool I worked voluntarily at a few special schools forchildren with cerebral palsy. I worked in Topshop,Littlewoods and in various clubs. My last job wasworking in a children’s home with older children withautism, aspergers and social problems which I loved. Butafter my last operation in 2002, it became too much andI had to leave.

In 2002 I become pregnant and gave birth to a veryhealthy baby boy, Jamie, who is now eight. Having Jamiehas been the best time ever!

At the moment I’m having a lot of problems withbreathing which are being investigated. My lungs arefine which I’m very surprised about with all the reflux

I’ve had over the years! They now think that myoesophagus (colon transplant) is pressing on my trachea, causing me to become very breathless. I’m still gettingbad reflux but I’ve just learnt to cope with it. I’mcurrently on DLA and ESA as I find it very hard to copefrom day to day due to my fibromyalgia and also due tothe reflux and the dumping syndrome.

Adult TOFsLooking forward - Tof Adult Faye Barnes shares her experience in this edition's TOF adult profile...

From the challenges of growing up with TOF/OA, tothe joys of having her child, TOF adult Faye Barnesshares her story here:

I was born in Plymouth 1975 with long gap TOF/OA. Myfirst operation was done at two days old at BristolHospital. I was constantly in and out of hospital. Thenin September 1976 I had a colon transplant. This thenbecome very twisted and tangled and had to be doneagain at about the age of three. I had six big operationsall to do with TOF/OA. I also suffered from an annular

Faye in hospital with one of the nurses she got to know

Blooming lovely. Faye with flowers!

Adult TOFs eventsAs you read this, we may be having our first-everAdult get-together. We've planned a dedicatedprogramme of events for adult TOFS and hope(subject to demand) to have a get-together onThursday 15 September in Worcestershire. Seepage 6 for full details. Do you have a suggestionfor a location for the next adult TOF get-together?Please let us know. Email info@tofs.org.uk

Does anyone have a suggestion for a locationfor the next adult TOF get-together?

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From the ForumHave you visited the TOFS online communityyet? You’ll find lots of parents’ tips on theissues that affect children with TOF/OA.

A recent discussion centred around TOF/OA childrengoing to parties after one parent shared herconcerns about an upcoming event. Parents’ tipsincluded: providing a list of ok food and drinks,providing a plate or a packed lunch and giving thehost family a ‘what to do’ in the event of a stuck ora choke.

Don’t forget, we provide badges stating “I have aTOF cough” or “No food for me – I have a TOF”which are very useful for parties and other events.To request your badges, please contact the TOFSOffice.

support for familiesof children born unable to swallow

tofssupport for families

of children born unable to swallow

tofsNo food for me

I was born with a

TOF

I have a

TOF cough

Come rain or shineThere was wet weather at the recent TOFS familyday at Kirklees Light Railway, but it didn’t stop thefun. With around eight parents and 20 childrencoming along, it was a special day for all attending.Thank you to TOFS Trustees Duncan and GillJackson for organising the event and our bestwishes go to their daughter Laura, who is currentlyrecovering from major surgery.

GlossaryDefinitions of technical and medical termsmentioned in some of our articles and familyupdates

Annular pancreas: A condition in which an abnormal ring of pancreassurrounds the duodenum and frequently causesintestinal obstruction. Common symptoms are nauseaand vomiting.

Dilatation: a procedure undertaken to widen a narrowing of theoesophagus (stricture).

Dumping Syndrome: this occurs as the results of some operations on thestomach. It is when digested food passes too quickly outof the stomach and into the intestine.

Gastrostomy: a way of taking in nutrition through a gastrostomy tube,a specially designed tube through which a baby or childcan be fed. It is inserted through the skin directly intothe stomach.

Reflux or Gastro-Oesophageal Reflux (GOR): the acidic stomach contents pass back into the loweroesophagus. This can cause pain, a reluctance to eat andpossible problems later in life.

Nissen Fundoplication: this procedure is commonly used to reduce Gastro-Oesophageal Reflux (GOR). The lower oesophagus isfreed up and the top part of the stomach (known as the‘fundus’) is wrapped around the lower oesophagus tomake a valve at the junction of the oesophagus andstomach. The hole in the diaphragm through which theoesophagus passes may also be tightened.

Hello to our new adminstrative assistant!

We are sad to say that Sam Hatfield has now moved on from hisrole here at TOFS, but we are pleased to welcome Debra Marks asour new Administrative Assistant. Debra will be supporting us byanswering the phone, dealing with mail and keeping ourdatabases accurate and up to date.

Debra has three children, the youngest of whom is still at juniorschool. She enjoys helping out at his school cooking with thechildren once a week and going on school trips with them.

When asked what made her decide toapply to work for TOFS, Debra explains:

“I have known about TOFS for many yearsthrough a friend and when a job becameavailable I decided to apply. The job itself isa rewarding position in being able to givesupport and reassurance to new parentsof TOF children.”

TOFS office staffed:Mon - Thurs: 8.30am - 3pmFri: 8.30am - 12.30pm(Shorter opening hours in school holidays.)

Out of hours emergency telephone support:Please call our answerphone on 0115 961 3092 for the number of the volunteer currently providing this service.

support for familiesof children born unable to swallow

tofsTOFSAddressTOFSSt George’s Centre91 Victoria Road, Netherfield, Nottingham NG4 2NN

Telephone0115 961 3092

Fax0115 961 3097

Emailoffice@tofs.org.uk

Websitewww.tofs.org.uk

Registered charity number327735

Company number2202260

Medical PatronsRaymond Buick MB Bch FRCSJames Dickson FRCS FRCSE FRCPCHJohn Duffy FRCS, MS, SF(CTh)Bruce Jaffray BMedBiol ChM FRCS(Glas) FRCS (Paed)Leela Kapila OBE FRCSEdward Kiely FRCS FRCS(1) FRCPCHPaul Losty MD FRCS (Paed)Gordon A MacKinlay FRCSEd FRCSSean Marven FRCS (Paed)Agostino Pierro MD FRCS(Eng) FRCS(Ed) FAAPCharles Shaw-Smith BM BCh MRCP PhDLewis Spitz PhD FRCS

Non-Medical PatronsRichard Briers OBE CBEDennis Foxon BADavid Griffiths MA (Oxon)

TOFS PresidentsGren and Christine Shepherd

Council of ManagementHon. Chair: Duncan JacksonHon. Vice chair: John PearceHon. Treasurer: Sandra HawkinsHon. Secretary: Graham SlaterSue Lewis-JonesDennis HarveyGill JacksonSophie Smallwood

Office personnelOffice manager: Diane StephensOffice Administrator: Jayne AllittAdministrative assistant: Debra Marks

The views expressed in Chew are not necessarily those of the editor or the Council of Management.

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SeptemberRobert Youngs 10/09/1995 Carly Campbell 09/09/1996Frazer Earl 13/09/1996 Kate Robbins 15/09/1996 DanielGreen 15/09/1996 Christopher Benjafield 04/09/1997Samuel Riley 09/09/1997 Martin McDonnell 16/09/1997 AmyLawton 26/09/1997 Bethany Gardner 09/09/1998 JamieGorman 25/09/1998 Phoebe Crabtree 01/09/1999 DanielTurner 03/09/1999 Lewis Espley 04/09/1999 Megan Byrne20/09/2000 Thomas Spencer 18/09/2001 Harry Knighton19/09/2001 Richard Weedon 21/09/2002 Rebecca Crowe26/09/2002 Joshua Earl 24/09/2003 Daniel Jeffreys09/09/2004 Amy Fox 18/09/2004 Millie Dyson 08/09/2005Daniel Hall 20/09/2005

OctoberPhillip Mainwaring 21/10/1996 Annie Mae Doherty12/10/1997 Francis Harrison 22/10/1997 Louise Chase18/10/1998 William Matthews-boote 22/10/1999 CaitlanMcCoy 26/10/1999 Bernadette Quinlivan 05/10/2000 CorinAstles 09/10/2000 Bailey Stark 13/10/2000 Bethany Patton19/10/2002 Elliot Anderson 20/10/2002 Dylan Baker22/10/2003 Lucas Nixon 27/10/2003 Adam Howarth31/10/2003 Louisa Shadlen 21/10/2004 Nadia Esseku-Otoo01/10/2005 Bradley Rowlinson 01/10/2005 Skye Barker11/10/2005 Daisy Stacey 16/10/2005 Isla Norrie Botto23/10/2005 Isla Botto 23/10/2005 Jack Stothard 26/10/2005

NovemberJaqueline Tilly 20/11/1995 Christopher Halsey 24/11/1995Ciara Myton 09/11/1996 Liam Viljoen 08/11/1997 EleanoreDerham 18/11/1997 Max Williams 23/11/1997 KateRemmington 26/11/1997 Jodie Kreft 28/11/1997 MilesCaven 19/11/1998 Adam C Williamson 17/11/1999Maddison Tyrer 21/11/2000 Dylan Robinson 07/11/2001Sinead Forde 08/11/2001 Antonia Maria McGrath 18/11/2001Elliot Smith 20/11/2001 Saffron Corbett 27/11/2001 LouisSmith 28/11/2001 Morgan Miles 29/11/2001 Luke Warburton03/11/2002 Milly Dimelow 07/11/2002 Nathan Ayling11/11/2002 George Plapoutas 14/11/2002 Benjamin Sims27/11/2002 Matthew Dolan 28/11/2002 Isobel Cattle19/11/2003 Elizabeth Mole 21/11/2003 Benjamin Bailey08/11/2004 Amy Ansbro 20/11/2004 Honey Chapman21/11/2004 Megan Fletcher 04/11/2005 Freddie Hughes18/11/2005

Happy Birthdayto all our TOF-OA Children.Children six years and above are listed below, under sixes willreceive a birthday card.