tofs chew Summer 2012 low res

tofs Summer 2012

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

Have you booked for the 2012 TOFS Adult Conference? Chaired by leading surgeon EdKiely (Great Ormond Street) and featuring other eminent TOF-knowledgable speakers.

Book now, space is limited: www.charitygiving.co.uk/2012adultconferenceMore information on the back page.

Inside� Page 3 – Interview with David Burge,

Consultant Paediatric Surgeon� Page 8 – TOFS National Awareness Week� Page 10 – “Didn’t she do well…” Our series

on TOF Adults and their achievementsfeatures TOF Lauren Leaver

...and much more!

Pictured: 11-year old TOF/OA Megan Byrne, (in the middle)with twin sister Hazel, and big sister Cara, have fun at theTOFS London party. See page 5 for more pics.

tofs chew Summer 2012:Layout 1 26/6/12 13:02 Page 1

2

A warm welcome to our new members!� Amanda Sayer and Tony Rother from Basingstoke – Lilly born

16 January 2012� Charlene Cunningham from Belfast – Daniel born 07 January

2012� Lisa Tran from Kent – Laith born 24 August 2011� Janine and Robert Meredith from Dewsbury – Isabella born 09

August 2011� Clare Allen from London – Samuel born 21 November 2011� Kata Degrell from Budapest – Huba born 19 September 2011� Dominique and Nicolas Vaudin from Mauritius – Elise born 12

February 2010� Alison Bandee and Peter Underwood from Felmersham – Iona

born 14 March 2011� Carole Shipley from Derby – Adam born 27 September 1970� Vikki Hibberd from Redruth – Codi born 13 November 2011� Nicola Bowes from Stockton-on-Tees – Reuben born 07

September 2011� Mary Quille from County Kerry – Conor born 04 July 2009� Jay-anne Vogan from Slough – Stephanie born 17 August 1997� Sarah Baker and Greg Clarke from Solihull – Kara born 04

September 2011� Sarah and Stephen Marsh from Wigan – Lily born 28 January

2012� Samantha Farr from Nuneaton – William born 18 March 2012� Amy and Nigel Atkins from Henlow – Kaitlyn born 21 April 2012� Katy Garrett and Dave Barber from Wilmslow – Harry born 4 June

2011� Alexis Wise and Graham Donahue from London – Sam born 8

February 2012� Sarah and Neil Holmes from Rotherham – Alex born 22

October 2010� Lisa Yardley and Adam Powe from Cumbria – Amaia Rose born

02 December 2011� Monika Rubin and Athanasios Staikos from Coventry –

Theodors born 04 May 2012

From the editor...Hello everyone, welcome to the Summer edition of ournewsletter. What a struggle it’s been to get everything wewant to say into this edition of Chew. So many specialTOF/OA children, with so many stories to tell. Sadly,though we expanded the last Chew from 12 to 16 pages,financial constraints mean we can’t do that in this edition.In fact, ‘financial constraints’ are two words floatingaround the TOFS office more than we’d like right now. Weconscientiously avoid becoming one of those charitiesthat’s always asking for more - but every now and againwe have no choice - read all about it on page 5.

We’re delighted to feature well-known consultant DavidBurge in this edition. Read his interview on page 3.Trustee Sue Lewis-Jones tells us about the TLC projectwe’re piloting on page 6. You may have a TOFS TLC livingnear you. Just call the office for their contact details.

Thank you for your phenomenal efforts during TOFSNational Awareness Week. See some piccies and readabout your achievements on pages 8 and 9.

Have you attended a TOFS party recently? A report fromour recent event in Edinburgh is on page 5. More photosfrom our London party and a report from our NorthEngland party will feature in the next edition.

Right, I’ve used enough of this precious space. Until theAutumn…

Diane Stephens, Chew Editor

PS: Next Chew will be with you end of October, latestdate for articles is 14 September. Send them by emailto [email protected]

From the TOFS Chair,Duncan Jackson:Celebrations have been upon us with theQueen’s Diamond Jubilee and I bet most of uswent to at least one event over the extendedBank Holiday. Sandwiches, sausage rolls,crisps and cakes all part of the standardmenu. However, not great for all TOFchildren. It’s quite a challenge to keep aclose eye on what they are eating, and howfast they’re pushing food into their mouthsbecause they want to play. When they have a stricture ordismotility, avoiding ‘stickies’ becomes part of our daily lives.It’s normal for us to give them Coca Cola, tap them on theirback if they choke or catch vomit in our hands! We areoften pleased when our children eat chocolate buttons andWotsits – where others are aiming for carrot sticks!

However, visitors from other families, unaware of thecondition, give that look of ‘what’s that parent doing to thatchild?’ or ‘that child shouldn’t be out with a cough like

WELCOMEWelcome to your Summer 2012 edition of Chew!

that!’ Then you have to explain all aboutTOFS!

Over the last 60 years great strides have beenmade in the care and treatment of ourTOF/OA, and yet caring for our children ormanaging our own symptoms is stillchallenging. What will the next 60 years bring,I wonder?

TOFS AGM Newsby TOFS Secretary, Graham Slater

This yearʼs AGM was held on May 13th. There isa full report on the TOFS website. The Accountsand other reports were all accepted. The AGMelected two new Trustees, Dr Caroline Love andWendy Colbeck. John Pearce agreed to takeover as Treasurer from Sandra Hawkins who hasresigned from this role, but remains a trustee.


3

Interview with…David Burge, FRCS, FRCPCH, ConsultantPaediatric Surgeon with University HospitalSouthampton NHS Foundation Trust.

David Burge has been operating on TOF/OA babies since 1985.In 2008, TOFS contributed £5000 to help fund a BAPS-CASSnational observational study into Oesophageal Atresia.

BAPS-CASS is a joint research initiative between the BritishAssociation of Paediatric Surgeons and the National PerinatalEpidemiology Unit (NPEU), designed to study the surgicalmanagement of a range of rare congenital anomalies.

David Burge was the lead investigator and speaks to CHEWeditor, Diane Stephens, about some of the outcomes of thereport. (The final report is pending publication and will bepublished here in CHEW in due course.)

Why did you get involved in the OA study?Oesophageal Atresia is of particular interest to me. I’veoperated on TOF babies for over 25 years. I am involved in theBAPS-CASS projects through my role as Chair of the BAPSResearch and Clinical Outcomes Committee. I also lectureabout the condition at a course for new surgeons in Oxford.

What were the aims of the study?There were several aims:to identify cases of OA, and estimate the national birthprevalence;to estimate the antenatal suspicion of OA and assess effecton outcome;to describe the current surgical management and outcomes ofpatients with OA;to use the information gained to plan for further research intothe surgical management of OA;to estimate the incidence of associated anomalies, and assessthe appropriateness of screening for these anomalies.

How did the study work?The 28 centres that do the TOF/OA repair supplied data on 151babies, out of the 184 that had been born during the period ofthe study.

Of these, 126 had the most common form of the condition -oesophageal atresia with lower pouch fistula.

Did the study throw up anything youweren't expecting, or highlight particular

areas of concern?Essentially, the study was a snapshot of current managementof TOF/OA in UK. It looked into how clinicians manage TOF/OAbabies before and after surgery. It was quite reassuring that,despite the lack of existing research, in some aspects virtuallyeveryone does everything the same way – especially in relationto management before surgery, type of surgery and some ofthe management after surgery.

However, in some areas it showed a wide variation in practice.One or two things in particular surprised us. We found thathalf of the babies had a chest drain put in at the time ofoperation, although previous reports in the literature suggestthat chest drains aren't needed.

We know that a lot of TOF/OA babies get reflux. What wedon’t know is whether it’s of benefit for the baby to be treatedfor reflux immediately from birth rather than waiting to see ifthey get reflux symptoms. This study shows that about 50% ofbabies were given prophylactic treatment, presumably basedon the preference of their surgeon. This leaves uscontemplating whether we should embark on a prospectivestudy to see if prophylactic treatment offers any benefits.

40% of babies had a contrast study (see glossary for definition)requested by their surgeon before they started their feed whichmight again suggest a further area for research.

There was another important variation in practice with respectto timing of feeding after the surgery. The average age atwhich feeding was started after the repair was 8 days, howeversome surgeons start oral feeding on day 2 or 3. Of course, thisdetermines how long babies stay in hospital. We’re hopingthe results of the study will demonstrate to surgeons that someof their colleagues are feeding their babies sooner.

Did the study look at any TOF/OA childrenpost-repair?No – however we have done a one-year follow up in respectto frequency of strictures; how many went on to have severereflux etc, and we’re hoping to have some results from thatin the next three or four months.

Why do some patients continue to haverespiratory and/or gastro problems?I think there are a number of well-known reasons - but alsosome not so well understood.

Reflux may be an issue because of aspiration into the lungs. Arecurrent TOF can also cause problems but this is relativelyuncommon. Tracheomalacia may indicate abnormal functionof major airways so resulting in poor clearance of secretionsfrom lungs.

Asthma seems to be more common in TOF children andno-one understands why. It could be aspiration is the causebut it’s difficult to prove that. If a child has symptoms of bothasthma and reflux then the asthma complication can makereflux worse.

The main problem in patients is swallowing. Difficulty inswallowing can be caused by scarring at the site of the join buteven children without strictures can have swallowingdifficulties because of abnormal contractions that help propelfood.

There are so many variations of the disorder and its cause isn'tquite understood. It is possible that some children have more


4swallowing problems than others because the muscle ofoesophagus and nerves that control the swallowing maysimply not be as well developed than others.

Is there a possibility that a baby may havehis tof/oa repaired at a local hospital?I’ll be amazed if that’s the case in the last 15 or 20 years. Thereare currently 28 specialist centres around the country,(including Dublin, in the Republic of Ireland), all of which tookpart in this study. Aftercare may certainly be delivered at alocal district hospital, usually by the surgeon involved from thespecialist centre, but the surgery for the repair happens at oneof the paediatric surgical centres. In our area we provideaftercare as an outreach service at the child’s local hospitalwhere they will see a member of the original surgical team.The local paediatrician, in the event of them having anyadditional problems, may also of course see them.

Should babies be discharged to the localhospital following the repair?In my experience if baby has had a tof/oa repair, by the timethey don’t need the specialist surgery team they should beready to go directly home. However if there are medical orother problems (such as prematurity) that require on-goingstay in hospital, then this can often be undertaken in the localhospital.

How do I make sure my TOF adolescentreceives the same standard of care once he'sdischarged into adult care.This issue has not yet been properly addressed for TOF/OAchildren in most centres as whilst they have specialist centresto see them in childhood, this doesn’t exist as they move intoadulthood. We have recently started clinics in Southamptonspecifically for adolescents. The variation in the TOF/OAcondition means that children can sometimes be dischargedfrom follow-up at 4 or 5 years old, and yet there are othersthat need ongoing specialist care. In their case, I try toidentify a specialist in their local centre for them to see inadulthood.

Would you advocate national guidelines forthe repair and management of TOF/OA?There is little existing research available to determine theseguidelines. Certainly, the numbers are sufficient in this studyfor it to used as a benchmark. It is worrying that in someaspects of care practice does vary enormously - for example,one of the areas that could be standardised to improvetreatment is when the baby commences feeding.

Another contentious issue is whether TOF/OA surgery shouldbe carried out by fewer surgeons. At the moment mostpaediatric surgeons would perform this operation yet with onlya small number of TOF/OA babies each year, there is anargument for less surgeons doing it and becoming specialistsin it. One way in which some centres are trying to deal withthis are to have two consultants present for every TOF/OArepair. This may present logistical problems to some centres,and make it difficult for new surgeons to learn the necessarytechniques for repair.

An emerging area is thoracoscopic repair, that is, minimallyinvasive (keyhole) surgery. Only 3 of the 126 babies in thestudy were repaired this way. Of course, this data was collectedfor the period April 2008 – 31 March 2009. It would beinteresting to see the numbers of babies who are repairedusing minimally invasive techniques now.

JuneJordan Stretton 08/06/1997 Lauren Reed 10/06/1997Sean Findlay 28/06/1997 Rebecca Fisher 27/06/2000Leah Brine 14/06/2001 Chloe French 21/06/2001 OliverPiggott 07/06/2002 Rhys Speers 11/06/2002 NavadaHaggart 14/06/2002 Michael Clement 26/06/2003 AaronAtkinson 03/06/2004 Musa Keyani 21/06/2004 MwauraNgugi 22/06/2005 Aaron Downey 24/06/2005 ChristopherMallett 24/06/2005 Nathan Beckley 30/06/2005 ConanGraffin 10/06/2006 Eden Gorrie 11/06/2006 ChristopherDash 14/06/2006 Nathan Ashwood 24/06/2006 OliviaEggleton 29/06/2006 Amelie McLynn 02/06/2007 LukeBenson 02/06/2007 Sarah Downie 07/06/2007 FinlayMerrington 18/06/2007 Joshua Sines 29/06/2007

JulySusanna Bannister 03/07/1996 Henry Turnell 06/07/1998Matthew Jones 24/07/1998 Anna Webster 05/07/1999James Bedell 21/07/1999 James McCormick 22/07/1999Musfirah Shariff 03/07/2000 Harry Coope 10/07/2000Louie McConville 11/07/2000 Joseph Styles 24/07/2000Adam Crofts Davies 25/07/2000 Gregory Maller26/07/2000 Andreas Fragias 14/07/2001 Jack Strange17/07/2002 Thomas Tanswell 03/07/2003 Ben Barker13/07/2003 Madeleine Hornibrook 18/07/2003 OliverCannon 01/07/2004 Lewis Carney 02/07/2004 RachelFinnigan 02/07/2005 William Flindall 05/07/2006 MeganShaw 05/07/2006 Ocean Phillips 07/07/2006 MadisonMelville-Taylor 16/07/2007 Ryan Taylor 19/07/2007Charlotte Mitchell 27/07/2007

AugustFelicity Poole 12/08/1996 Jack Watson 08/08/1997 ElinBailey 14/08/1997 Stephanie Vogan 17/08/1997 MatthewHeaven 29/08/1997 Gabriella Shelton 01/08/1998Charlotte Odonnell 14/08/1998 Robert Thompson14/08/1998 Bethan Walford 29/08/1998 Daniel Williams29/08/1998 Tom Parker 08/08/1999 Catrin Davies19/08/1999 Jamie Hodgson 20/08/2000 Lewis RaymondLogan 07/08/2001 Eboni Rose Halpin 08/08/2001 GeorgeLong 10/08/2001 Harriet Hughes 13/08/2001 WilliamAddis 23/08/2001 Sean Canning 16/08/2002 JackCoulston 23/08/2002 Alex Gordon 29/08/2002 GraceNorcup 08/08/2003 Toby Stephens 21/08/2003 AmyScuffins 12/08/2004 Antonia Brown 18/08/2004 LewisBoddy 06/08/2005 Matthew Smith 12/08/2005 WyattTaylor 16/08/2005 Ben Horley 22/08/2005 Elizabeth Maas08/08/2006 Harrison Cooper-Jones 10/08/2006 OliverOkley 09/08/2007 Benjamin Geary 13/08/2007 GeorgeCanning 29/08/2007 Stevenson 12/05/2006 TahishShrivastava 18/05/2006 ThomasFryer 21/05/2006 JackJohnson 22/05/2006 Shay Murphy 24/05/2006

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


5

Times are hard – for TOFSas well – please help!John Pearce

As a charity, TOFS relies on donations of one type oranother – mostly from members and friends – andon fund-raising, again mostly done by yourselves.We don’t get any public-sector funding. In anaverage year, it costs about £70,000 to runeverything that TOFS does, and there are limitedways to reduce spending as our budget is alreadyvery tight.

In 2010 you did TOFS proud with a lot of very effectivefundraising, partly in our October 2010 awareness week.That left a surplus, and the trustees decided not to askyou for a repeat performance in 2011, as we were ableto use the surplus from 2010.

However cash-flow is not going well for us so far in2012. In the period Jan-Apr (1/3 of our year) we receivedonly 1/6 of the money that we need for the whole year.A big thank you to all those who raised money for TOFSin our April awareness week. But we now really need toask you all to raise a lot more money for TOFS throughthe Summer. Anyone want to do some sponsored runs,or take part in one of those many sponsored bike rides?Might you have a contact at a (private) sports ground orindoor shopping centre where you might be able to getpermission to run a collection? We have a fleet of TOFSbuckets. Please contact the TOFS Office for ideas.

The TOFSEdinburgh PartySue Lewis-JonesOne cool but sunny day in April, twenty five adults andeighteen children made their way from places as far away asInverness, Dundee, Carlisle, Glasgow (and Nottingham!) toEdinburgh to attend the very first TOFS children's party totake place in Scotland.

Bruce Rennie, a TOFS volunteer, (and now one of our new TLCs)had decided to bring TOFs families together in his area andalong with Diane in the TOFS Office, they had put his idea intopractice.

Trustee Sue Lewis-Jones attended and Amanda McCabe,Consultant Paediatric Surgeon, popped in from the EdinburghChildren's Hospital to give a fascinating presentation on keyholesurgery. Interestingly, at least six of the children present had hadkeyhole surgery to repair their TOF/OA! It promoted a lot ofquestions and a valuable discussion followed.

Meanwhile, the children had been happily entertained. Beforewe knew it, it was time to reunite for a picnic and a final chancefor families to talk to others. Two hours had stretched into nearlythree - time went by far too quickly!

Feedback was positive and it seems some of you are alreadylooking forward to the next time... Bruce?

TOFS London partyAs you can see we had a great time at our Coram's Fieldsparty in London. Full report and more photos will followin the next edition of Chew!


6

Introducing our TLCs byTOFS trustee, Sue Lewis-JonesTLC stands for Tender Loving Care as we allknow. But as from now, it also stands for TOFSLocal Contact!

We are a support group made up of parents,grandparents and increasingly, adult TOFs, with theunique insight and experience that only raising andcaring for our TOF children can bring - and in all the waysthat it can encompass. Collectively, we know about thestresses and strains, and the difficulties that a TOF canencounter. We know about strictures and dilatations,tube feeding, reflux, the difficulties in weaning and'stickies' - you name it, we know about it!

Support is what we at TOFS do best, and we do itthrough our website, our TOFS Facebook site, our TOFSOffice, our Conferences, the Chew magazines, leaflets,children's parties and telephone support and nowthrough our TOFS Local Contacts, our TLCs.

Having a contact for different areas is nothing new aswe have had these in the past, often very successfully.We believe that the role is important enough to bringback, and we are now doing this on a trial basis.Working in unison with and devolving support from theTOFS Office, our TLCs can take TOFS leaflets and postersin to hospitals, be a point of contact for new TOFfamilies and help to organise meetings, however big orsmall, for all TOFS members in their area.

We have many committed volunteers in TOFS doingvarious, valued tasks for our group and some of these,already pro-active in their area, are our first TLCs. Wehope to add more later in 2012.

Introducing our TLCs:

Kay Leech, North-West England

“I’m Kay, married to Gary, Mummy to Harriet who will be4 in May and step mum to Nichola (29) Catherine (26)and Emily (22). I live in Blackburn, Lancashire and workfull time for BT. Harriet was born with TOF and long gapOA as well as a VSD. The VSD closed on its on and thefistula was repaired at 2 days old with a gastrostomybeing inserted to assist with feeding. The atresia was

finally repaired at 4 months. Following the atresia sheended up with horrific reflux which required a Nissen'sfundoplication.

In June 2010 Harriet was admitted with a suspectedchest infection which ended up being 3 repeat fistulas.These were successfully repaired but Harriet ended upbeing diagnosed with bronchiectasis, caused by repeataspirations. Harriet is still tube fed but we’ve justcommenced on a 'Fun with Food' programme. I havealready organised a party on TOFS’ behalf, and I lookforward to offering support to other parents.”

Angela Carter, North-East England

“I’m Angela, mum to Jenson who was born 7 weeksearly in Jan 2007 with long gap OA and a serious heartabnormality. We had a long experience on PICU (RVINewcastle) although thankfully he had a successfulrepair at 12 weeks old. Jenson had severetracheomalacia and had a tracheostomy for 3 yearsfollowing heart surgery when he was one. Despiteregular chest problems, he is growing big and strong.He is still 100% gastrostomy fed, although we are on aweaning programme at the moment and hope one dayhe’ll eat normally. I’m happy to share experiences,provide any support either over the phone or meet otherTOF parents locally, support organising local events etc.Just call the TOFS office for my telephone number oremail address.

Jenny Bryne, South-East England

“I am a mum of three wonderful daughters. One of mytwins was diagnosed antenatally as having anOesophageal Atresia; she had a mini button formed atbirth and has continued to be fed enterally throughouther life; at eight weeks old she had a partial gastric


7

EAT: What’s in it forTOFS?

pull-up to correct a long gap atresia; eating haspresented many difficulties as food would get stuck andshe would vomit at most meals; gaining weight hasalways been a problem. Megan has had persistentproblems with reflux, chest infections and night-timecoughing. When she was nine, a fistula was identifiedand she had an operation to repair this and a full gastricpull up to reduce reflux; she is going through more teststo control reflux and aspiration. Megan is determined,fun-loving and feisty and I am very proud of her – thenext challenge will be secondary school!’

Bruce Rennie, Scotland

“Christopher was born with a short gap TOF/OA (and alarge VSD) and was repaired at 2 days old at Sick Kids inEdinburgh. Christopher is now a (very) lively almost 4 –year old, and eats quite well. When Freya and I becameTOF parents it felt like we went from nought to sixty ina couple of seconds, over a very bumpy road – we hadfantastic support from our families and the magnificentmedical staff at Sick Kids, but there were so manyquestions every day that they couldn’t answer for us.Then, thank goodness, one of the doctors mentionedTOFS… It was a revelation – the website and forum, thepublications and the endlessly patient and helpful officestaff have all combined to help make our journey mucheasier and a lot less lonely. The world can look quitebleak from a camp bed in the Sick Kids at 3am, but ithelps so much to know that there are plenty of peoplewho know just how you feel. I hope that I can helppeople to navigate those difficult first few days and putthem in contact with the wellspring of knowledge,advice and simple understanding that is TOFS just whenthey need it the most.”

Julie Logan, Northern Ireland

‘Hi everyone, my name is Julie Logan, my husband Leslieand I have 3 sons; our eldest Lewis was born withTOF/OA in August 2001. Lewis was taken to the Royal

200 Club winnersFebruary - Kellie BarkerMarch - Tony Fogg (who very kindly donated hiswinnings back to TOFS)April – Angela GriffinMay – Mary Findlay

Children’s Hospital in Belfast and that evening his repairwas done by Mr Boston. Lewis did have feedingdifficulties and we always used a blender for his food, ashe could not tolerate lumps until he was 3. Without theTOF CHILD book, we would never have completelyunderstood. Today he always needs a drink wheneating. Lewis gets a lot of upper respiratory and chestinfections and is taking inhalers and Losec daily. Lewisis under the care of a gastroenterologist and a chestspecialist. I am delighted to be a TLC. Raising awarenessof this condition and VACTERL means a lot to me. I lookforward to hearing from parents of TOF/OA children.’

Catherine Downey, Republic of Ireland

‘Hi, I’m Catherine Downey from Dublin. I have 2 sonsaged 7 and 3. Aaron my eldest was born with TOF in2005. We were fortunate that his operation was suc-cessful, as it was a very tight join. We had entered thiswhole new world dealing with a child having a life sav-ing operation, doctors and all the medical terms which Ifound initially hard to absorb.

Family and friends were fantastic but I felt no one reallyunderstood what I was going through. I just want peo-ple to know there is light at the end of the tunnel andwhile those first few years are tough it DOES get better.

I am happy to link up with any other parents of TOF kidsin the Republic of Ireland, share experiences and raiseawareness of TOFS as having a friendly ear or having acry does help. Those first few months are the mostdaunting and if anyone wants to get in touch with me Iwould be more than happy to help.’

If you would like to contact the TLC in yourarea, just call or email the TOFS office with yourcontact details and we’ll pass them on.


8www.justgiving.com/Nicola-Boweswww.justgiving.com/diane-maskrey4tofs.Thank you, once the pages close we’ll publicise the amountsraised.

RaffleBig thanks go to Hugo Smith’s mum Kim whose recent raffleraised £52 bringing her total fundraising to an amazing£1088.89.

“I managed to get all of the prizes donated to us by emailingsome big and small local companies and was pleasantlysurprised by their kindness. Hugo's nursery also handed outinformation leaflets telling all of the parents of the nurseryexactly what a TOF is and how the condition affects childrenborn with TOF. The local newspaper also covered the story andhelped to raise further awareness in our local area. Every yearwe try to do some kind of fundraising and awareness-raisingof the condition.”

We hope to tell you more about Hugo’s TOF journey in the nextedition of Chew.

Our thanks also go to TOF James Peace, who successfullycompleted a BATAK challenge and iscurrently raising money for TOFS.

Mum Clare tell us all about it:

“James was born at Stoke Mandeville Hospital and wastransferred immediately to the John Radcliffe Hospital wherehe underwent life-saving surgery within hours of birth underthe care of Mr Nicholas Dudley.

He is now 18 years old and is a budding single-seater racingdriver. In 2010 he became British Junior Kart Champion (thesame accolade as Jenson Button) and in 2011 he made themove to single-seaters competing in Formula BMW in theIntersteps Championship, winning 2 races and finishing on thepodium 11 times.

James feels it is time to give back and the National TOFSAwareness week was a perfect way for him to do just that.

James has undertaken to complete a BATAK challenge striking5000 hits in 60-minutes. (The BATAK machine is wall mountedgrid system that flashes lights which need to be struck by thehands to put them out.) Every successful strike out counts asa hit and ‘race-fit’ racing drivers such as Jenson Button andMark Webber can do around 115 in a minute. James’s recordto date is 116 per minute and the target he has set himself tokeep going for a full 60-minutes is no mean feat. Thechallenge took place on 25th April at iZone, Silverstone andJames scored a total of 6080 hits in 60 minutes.

& TOFS National Awareness WeekApril’s Awareness Week was held between 22 and 29 Apriland was very successful in promoting TOFS and attractingfunds. Some members’ stories and articles featured inboth local and national newspapers and others haveaccomplished strenuous feats in order to raise funds toprogress the work of TOFS. Thank you, everyone!

Below are some of our members who were featured:In March an article in The Scotsman featured ChristopherRennie’s story.

Emma Keaton with baby son, Thys Bell, have featured in anumber of local and national newspapers and on television:ITV news, Mansfield and Ashfield Chad; The Sun; Telegraph;News of the World, Daily Mail, Metro, Real People and DailyStar. Emma is currently preparing an article for the next editionof Chew.

Sue Lewis-Jones’s article in the Nottingham Evening Postinvited all those born with TOF to a coffee morning. She wassurprised to find that a 47-year old man who lives inNottinghamshire contacted her to say that he thought that hehad the condition. He attended the coffee morning – and hewas a TOF!

Raising FundsFundraising events are vital to progress the work of TOFS. Theyalso help to inform people about TOF/OA and the work thatTOFS does.

Donations are still coming in – if yours isn’t listed below thenwe haven’t received your donation in time for the deadline forthis edition and we’ll list it in the next CHEW. Here’s a round-up of what we’ve got so far.

Coffee MorningsJohn and Alison Pearce from Bucks - £257.00Sue-Lewis Jones from Nottingham - £180Suzanne and Myles Thorne, from Oxfordshire - £160

Cake SalesFay Belham, from Cambridgeshire,£20. Rachel Hadfield fromLancashire, £536.31, including asponsored bounce at Cherry Treepre-school (which daughterBeatrice attends).

MiscellaneousEvents and DonationsJulie Logan, from Northern Ireland with her EasterBasket, £162.50B. Newey £10Sandra Hawkins £20

Some of you have set up Just-Giving pages to raise money forTOFS –you can support TOFS by visiting:

Fundraising


James had other health complications too, some of which arestill with him today and will be forever which makes everythinghe has achieved to date even more special and amazing!

James thought it would be good for other children to read abouthim and realise that you can achieve your dreams and nothing,not even having a gaping great hole in your oesophagus at birthshould stop you!

Support TOFS by visiting James’s justgiving page at:www.justgiving.com/James-Peace-Race

London MarathonThanks to everyone who ran the marathon, not least 73 year oldMr Patrick Dobbs who raised £300. We are very impressed atanyone running a Marathon at age 73, but there is far more…,He writes:“I ran the London marathon in a time of 3:48:46, to place fourthin the masters over-seventy category. One hundred and sixtyfive athletes finished in my age group.

I am 73 years of age and one of 17 athletes known as the ‘EverPresents’ who have run and completed all 32 London Marathonssince 1981. I am a member of Thurrock Harriers A.C.

I am the grandparent of Thomas Smith, born 7 May 2004 withTOF/OA. He is a grand little fellow who is doing very well atschool and loves to play football”.

You can still support some of our other marathon runners bydonating electronically. Here are the ones we know about:www.charitygiving.co.uk/jamesmoorewww.justgiving.com/Nicola-Richer0

Coast to CoastJust as we’re going to print, past trustee, Pat Fergusson, shouldbe doing Wainwright’s Coast to Coast Walk - that’s an amazing193 miles from St Bees to Robin Hood’s Bay, in aid of TOFS andFylde Sharkes, a swimming group for disabled children aged 5 -18). If you’re quick you can still support us by posting a chequedirectly to her: Pat Fergusson, Conifers, Serpentine Walk, Lytham,Lancashire. FY8 5PB).

Many thanks to:� Pat Brown, raised £105 by holding a coffee morning at

her local church. Pat is a neighbour to Louise Fox whosedaughter Gabriella was born with VACTERL.

� Kilbury Construction donated £200. The money was givenin lieu of sending Christmas cards. Managing director,Colin Westbury, is the uncle to Shannon Fraser-Westburyborn with TOF/OA.

� Members of Eccleston Lodge No. 7754 - £125.00donation

� John Pearce - £50.00 CAF donation� Francesca Liuzzi – £250.00 raised by the students at

Manchester University ‘Medsoc’� Family members of the Dowlings, the McConvilles and the

Hiltons collected £70.00 instead of buying each otherthose ‘special Christmas cards’.

� £21.00 change donation from Slimming World in Bramley.Sent in by Sarah Flude, mum to Niamh born with TOF/OA

� Mr Seth Clay donated his lecture fee of £25. He gave aspeech at a meeting of the Liverpool & DistrictRadiographic Society.

� Lloyds TSB employee Kerry Prentice raised £312.50 byholding a fundraising raffle. Lloyds TSB Foundation thenwent ahead and donated a further £187.00 through their‘Matched Giving Scheme’

� C Brewer & Sons Ltd - £200 donation in support of JamesMoore’s London Marathon run

� Sandgate Phoenix Group donated £25 following a talkgiven by David Paton, granddad to TOF child Lewis Carney

� Penny Sharp, mum to Jayden - £40.00 donation.

9

NOREEN RAMSEY DOWLING1972 - 2012Noreen was born in 1972. She was fosteredby Pam and John Dowling from the age of4. Noreen was very underweight and theonly information given to Pam and Johnwas that Noreen was a child with a coughwho had failed to thrive. Over the next fewyears The Dowlings nourished and nurturedNoreen, but she always had trouble withher eating and remained tiny. She hadnumerous operations throughout her lifeand tried to lead a normal life. Noreen wasable to work for 10 years with DTI until she was pensioned offthrough ill-health. She lived independently with the assistance ofher Carer, Tammy, but life was not kind to her. Withdeteriorating eyesight due to 3 strokes, she was registered blindbut with the help of her Kindle she was able to continue her loveof reading. Noreen became more and more dependent onoxygen and her wheelchair to get her about.

Noreen’s final struggle was in April following the siting of agastrostomy tube. She remained cheerful and was full ofenthusiasm, looking forward to returning home the followingweekend, ever the optimist. The operation had gone well but aserious chest infection followed from which Noreen did notrecover.

With the introduction of the TOFS Adult Facebook site, Noreenwas able to meet others and became friends with a number ofpeople who had similar difficulties. Noreen and Pam often spokeabout the donation of organs, Pam laughing that, as she gotolder, fewer organs would be available but she would happilydonate anything that might help somebody else and Noreen feltthe same. It was brain damage through stroke that caused hervisual impairment - Noreen’s corneas were perfect and weredonated to give one or two people the gift of sight.We’ll all miss her smiling face.

Christine Shepherd

In memory:� £172.81 donated in memory of the late Mr John Wilton� £225.00 in memory of the late Mr Stephen Flude, grand

father to Niamh Kettleborough born TOF/OA.� £226.83 donated by family and friends in memory of the

late Noreen Ramsay-Dowling

Can you help these families:Denise, mum to TOF Sinead, from Ballymena in NorthernIreland writes:”Sinead is a very happy, healthy ten-year old. We have been toldshe suffers from middle syndrome/mid line syndrome. She wasborn with a wide nose and has been to GOSH . They have usedthe medical terms mild hypertelorism and frontonasal dysplasia.She may have to have an operation to correct this depending onher and our wishes. We are going to GOSH for a review andformal assessment in August. I am curious if any other TOFmembers have a similar problem (wide nose) and would like moreinformation to understand what middle syndrome is…”

Mum Roberta writes from London:“My daughter was born with VATER (now known as VACTERL)but not TOF. She has had various extra problems over the yearsincluding gynaecological and chronic abdominal pain and hasnow been diagnosed with migraine. Do any other VACTERLmembers suffer from migraine – and does it have a VACTERLconnection?

Please contact the TOFS office if you can help either of theseparents.


10

TOFs in the Forces!Why not?

Roger and Barbara Wraight from Crewe updated us ontheir son Christopher, now 27. Christopher had to showdetermination in following his chosen career path buthas now served in the Royal Air Force for nine years.

‘As a child, Christopher had numerous visits to Alder Hey, whenhe got food stuck and for routine dilatations. The doctors andstaff were always brilliant. We used to ring the ward and theywould say bring him straight in. Christopher continued tohave occasional problems with his eating until he was about10yrs old, the last time we needed to go to hospital with him.

His initial application to join the RAF was declined on medicalgrounds, the Air Force saying that they would not take him“just in case”. We lodged an appeal and wrote to his surgeonat Alder Hey Hospital in Liverpool who wrote a letter detailinghis procedures, saying that there was no reason why he couldnot serve in the RAF. Fifteen months and two medicals later,they agreed that he was fit to serve and he joined up inFebruary 2003.

He has since served in the Falklands, Qatar and Afghanistan,been on detachments to America and with the Navy in theMediterranean. Chris loves his job and is due to be promotedto Corporal.

We would urge any TOF who is rejected by the forces to appeal.As Chris has shown, with determination you can beat thesystem.

Interested in applying for yourmedical records?

TOFS Trustee Sue Lewis-Jones told us about her son Ben, whohas applied for copies of his medical records before they’re lostin a sea of progress. Ben emailed the freedom of informationoffice, (in Nottingham’s case, [email protected]) and they senthim a form to complete. There is a £10 admin fee plus chargesfor copies of x-rays etc.

Adult Tofs

Thinking ahead to university –any advice?We have had an enquiry from a mum of a bright 15 year oldwho was born with TOF/OA, and is still tube-fed overnight. Hecontinues to suffer from severe reflux despite having twoFundoplications and jejunostomy. Alderhay may keep him onuntil 20 or 21 before discharging him to adult care.Academically he should do well but mum’s wondering howhe’ll cope at university. Do you have any experience of this orany advice? Please contact the TOFS office if you can help inany way.

“Didn’t they do well”Adult TOF Lauren Leaver from Australia...

My name is Lauren Leaver and I have been living in yourbeautiful country for the past 18 months. In 1984 I was borntwo months premature weighing a tiny 1.1 kg and soon afterit was discovered I had a TOF. I had to be elaborately plumbedwith feeding tubes into my lower gut and breathing tubes fortwo months until I was big enough at 1.5 kg to withstand therepair operation. I remember being in and out of hospitalthroughout my childhood with dilatations, endoscopies andtests to check the acidity levels in my gut. My friends thoughtmy party trick of drinking milk, hanging upside down on themonkey bars and having it come out of my nose the coolestthing ever!

At puberty the TOF scars below my right shoulder blade andcriss-crossing my abdomen became quite an issue and I refusedto wear bikinis – not a cool thing to do growing up on a beachin Sydney, Australia. My mother promised to allow me plasticsurgery for my 21st birthday…

Now I am 27 years old living in Shoreditch, London, workingfor a large financial institution. I have an Economics Degreefrom the University of Sydney and after my studies Ibackpacked around North and South America for 18 months –trekking the Peruvian Inca Trail to Maccu Piccu. I wasdetermined not to let any health issues interfere with myadventurous spirit and have come to the conclusion thatplastic surgery is NOT an option and have no self-image issueswhatsoever.

My experience of being an adult TOF has been toughemotionally. I found no support transitioning frommy belovedpaediatrician into the adult system. After trial and error, I havenow found a team of gastro surgeons that I trust, in my hometown of Sydney. The annual endoscopy and dilatations are aperfect excuse to return to Australia and visit my family!


11

The side effects of my TOF are especially noticeable as soon asI get a cold. I do not go anywhere without a plastic waterbottle in case of food sticking in my stricture. I hate soup as itreminds me of all the mushed up food I used to have to eat asan underweight child and I am vegetarian. My mother, in aneffort to keep me well nourished, actually used to chew up mylamb chops then feed me like a bird feeding her chicks!

All in all, I would not be the person I am today if not for myTOF. I love my life – every day is a new adventure and I don'tfeel at all inhibited by any of the side effects. And bring on theEnglish summer - I have a new bikini...

A TOF Tale of theUnexpected… Sue Lewis-JonesAs our plane gathered speed down the runway on a cold mistymorning, en route to the warmer climes of Tenerife, I had noidea that the next four hours would turn out to be ratherdifferent from what I’d envisaged…

Four hour plane flights can seem like an eternity and so I hadcome prepared with the latest gripping book, a Sudoku, ajumbo crossword and of course, my husband Mervyn, to chatto. I had already traded in the usual niceties with the lady nextto me before expecting to escape into the thrills of the nextchapter… but this time it was different. She and I were drawninto conversation, quickly finding out that we had lots incommon – likes, dislikes, both recently retired, three grown upchildren, two black cats, she lived near Derby, I lived nearNottingham (not far from each other) and so on and so on.

Thirty thousand feet up in the sky, she told me that her eldestson had had to have major surgery when he was born… andas you all know, tell that to any TOF parent and curiosity willget the better of you…

“Well it was his oesophagus you see and his trachea….” Myjaw must have hit the floor before I explained that my middleson had been born with the same condition! Neither of uscould believe it. There we were, two strangers who by somestroke of fate had been allotted plane seats next to each other,both of us TOF mums. What is the likelihood of thathappening? I told her about my son Ben, now twenty eight,the problems he’d had and my involvement with TOFS. I learntthat her son Adam had been born forty one years ago and thatthis was the first time she had ever spoken to another TOFparent! We talked non-stop, oblivious to anything or anyoneelse – thankfully our respective partners appreciated the specialcircumstance and so didn’t mind being ignored for most of theflight.

Landing in Tenerife, we finally introduced ourselves properly,Carole Shipley and Sue Lewis-Jones. We swapped contactdetails promising to meet up again and united by that verystrong TOF bond, gave each other a huge tear filled hug, andstepped out, into the sunshine.This TOF tale of the unexpecteddoesn’t end there because Carole and I get on well and havemet up several times since then. Carole has read the TOFSleaflets and copies of Chew avidly, learning for the first time inforty one years the facts about the TOF condition. She wishesshe’d had them when Adam was born.

Carole says she doesn’t understand what on earth made hertell a stranger on a plane about her son having major surgerybut she’s glad she did. She too has a very interesting tale to tell- but that’s for another time…

Glossary

Definitions of technical and medical termsmentioned in Chew:

Prophylactic treatment: to prevent ill health

Aspiration: inhaling fluid into the lungs

Tracheomalacia: ‘floppiness’ of the trachea

Dilatation: term used to describe a procedureundertaken to widen a narrowing

VACTERL: acronym for a group of disorders occurringtogether. The letters stand for Vertebral (spine), Anal(backpassage), Tracheal, Esophageal (from theAmerican spelling), Renal (kidney) and Radial (radiusbone in the forearm)

CHARGE: acronym describing a group of anomalieswhich are sometimes associated with TOF/OA. Theletters stand for: Coloboma (defects affecting the pupilof the eye), Heart disease, Atresia of the choanae (thepassages at the back of the nose), Retarded growth,Genital hypoplasia (underdevelopment of the genitalorgans) and Ear anomalies/deafness

Long-gap OA: when the gap between the two ends ofthe oesophagus is too large to bridge immediately

VSD: Ventricular Septal Defect (a hole in the wallbetween the lower chambers of the heart)

Nissen’s Fundoplication: this procedure is commonlyused to reduce Gastro-Oesophagel Reflux GOR). Thelower oesophagus is freed up and the top part of thestomach (known as the ‘fundus’ is wrapped around it.

Bronchiectasis: term used to describe damage to thelarge airways, or bronchial tubes of the lungs

Tracheostomy: the surgical creation of a connectionbetween the trachea and the skin at the neck, and theinsertion of a tube into the trachea to preserve a clearairway. Used in the management of severetracheomalacia.

Gastrostomy: surgically created connection betweenthe inside of the stomach and the body wall

Gastric pull-up: an operation where part of thestomach is pulled into the chest

Jejunostomy: an operation to create an opening ofthe jejunum (small part of the intestine) to a hole(stoma) in the abdomen

Adult Tofs


support for familiesof children born unable to swallow

tofsAddress: TOFS

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

Telephone: 0115 961 3092Fax: 0115 961 3097Email: [email protected]: www.tofs.org.ukRegistered charity number: 327735Company number: 2202260

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(I) 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 and Hon. Treasurer: John PearceHon. Secretary: Graham SlaterSandra HawkinsSue Lewis-JonesDennis HarveyGill JacksonSophie SmallwoodWendy ColbeckDr Caroline Love

Office personnelOffice manager: Diane StephensOffice administrator: Jayne AllittAdministrative assistant: Debra MarksThe views expressed in Chew are not necessarily those of theeditor or the Council of Management.

design

:www.instaprint.co.uk

TAKING BOOKINGS NOW!TOFS North-East England party, DurhamVenue and time will be confirmed on our website and FacebookTo book, email full details of who'd like to attend, along with an

up to date mobile number for the day to: [email protected]

Saturday 15 September 2012

TOFS 2012 Calendar

More details of events at:http://www.tofs.org.uk/index.php/tofs_events/dates_for_your_diary

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 thenumber of the volunteer currently providing this service.

Chew editorial board: John PearceChristine ShepherdSue Lewis-JonesDiane Stephens

Saturday 6 October 2012

TOFS Adult ConferenceHoliday Inn, Reading South, RG2 0SL*

Chaired by leading surgeon Ed Kiely (GOSH) and featuring othereminent TOF-Knowledgeable speakers. Spaces are limited so

please book and pay now at:www.charitygiving.co.uk/2012adultconference

*Half a mile from M4 Junction 11 with the A33. Please bookdirectly with the hotel if you need accommodation, make sure

you book the correct Holiday Inn as Reading has several.Reading is also highly accessible by train; the hotel is about 3miles from the station. Email the office [email protected] for

more information, including travel information.

Starting school can be a dauntingtime for parents of TOF/OA children.You can download a useful guide from our website(www.tofs.org.uk) for educating your child’s school aboutTOF/OA and how it affects your son or daughter.

Some children need more support than others and thenational charity IPSEA (Independent Parental Special EducationAdvice) provides free legally-based advice to families whoneed to understand the complex SEN (Special EducationalNeeds) system.

IPSEA has produced 40 on-line resources to help parents takeaction with common SEN issues. These are available todownload on their website. http://www.ipsea.org.uk/

Postage is now Pricey!So please help us to save money by contacting you all byemail, rather than post. In 2011, TOFS spent just over £1500on postage - that's in addition to the postage for the 4 issuesof Chew. Obviously we can expect postage to cost us more in2012, unless we can really cut down on the number of lettersthat we send.

If you have not received an email from TOFS recently, weprobably don't have your correct email address - so pleaseemail us that at [email protected], please email the office to tell us of any email addresschanges. Whilst we are on the subject, please let us know ofany changes in your normal postal address, for good measure!

By the way, if you’d like your copy of Chew sent to you viaemail instead of posting, just contact the office and we’llarrange to do just that.


Documents

tofs chew Summer 2012 low res