t o f s Winter 2011 chew Support for families of children born unable to swallow TOFS (Tracheo-Oesophageal Fistula Support), the charity that supports families of children with Tracheo-Oesophageal Fistula and associated conditions Inside ● 2011 TOFS Conference ● TOFS get together updates ● Adult TOF survey results ● 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! Pictured: Matilda shares a smile! Meet Matilda Green, who organised a special Halloween get together to raise funds for TOFS! Read more about Matilda over the page.
Transcript
tofs Winter 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
Inside� 2011 TOFS Conference� TOFS get together updates� Adult TOF survey results� 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!
Pictured: Matilda shares a smile! Meet Matilda Green, whoorganised a special Halloween get together to raise funds forTOFS! Read more about Matilda over the page.
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WELCOMEA warm welcome to our new members!
� Rachel Koster and David Karliner from London - Loui Ben born
08/08/08� Alice Emery from London - Charlotte born 17/12/09� Lisa and Luke Sines from Surrey - Joshua born 29/06/07� Emma and Michael Bell from Nottingham - Thys born 21/01/11� Shelley and Kirk Litchfield from Bournemouth - Leon born
14/03/11� Anna and Warren Barker from Crawley Down - Alexander born
27/12/06� Stina Wirfelt and Matthew Samuel from Glasgow - Axel born
21/07/11� Karen and Noel Weir from Carlisle - Kade born 16/11/10� Claire Mulliner from Cheshire - Louisa born 19/03/11� Amanda and Matthew Prout from Salisbury - Jasmine born
14/11/08� Alison Blakeman from North Yorkshire - Philip born 17/04/09� Sally and Chris Jones form South Africa - Madison born 29/06/11� Louise Cullen from Milton Keynes - Jared born 16/01/11� Sarah and Stephen Ashwood from Lewes - Nathan born 24/06/06� Helene and Michael Keating from Kent - Henry born 17/05/05� Patricia May from London - Grandparent
Cover story:Pictured on this issue’s front cover is 11 year oldTOF Matilda Green. She wrote to us recently to tellus about her fundraising achievements:
“We had a wonderful Halloween party withdecorations, a dance contest, a spooky trail, and agame with loads of sweets and things. We had jacketpotatoes too! Everyone dressed up andlooked amazing. At the same time weraised lots of money for TOFS - £107.50! Ihope you find this useful.”
From the editor...Welcome to your Winter2011 issue of Chew!
We hope that you had a greatChristmas and that 2012 has startedwell for you! In this issue of Chewyou’ll find write ups from the latestTOFS conference. You can also stayup to date with news from the EATgroup and of course, news andupdates from TOF families and adultstoo! Thank you for your continuedsupport and for sending in all yournews. Please keep your storiescoming in! Our next edition of Chewwill be with you in the first week ofApril. Please note the latest date forinsertion is Friday 10 February. Welook forward to hearing from yousoon!
On a different note, this will be thelast issue of Chew that I edit. Afterseven years in this role, I am morethan a little sad to say goodbye toyou. It has been a privilege and a joyto edit your letters and updates - andto get to know you and your familiesat the TOFS events I have attended! Iwish you all, and TOFS itself, the very,very best for the future.
Camilla Zajac, Chew Editor
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Family updates and newsRebecca’s storyNicola Slator wrote to us from Bingley telling us about herwonderful daughter, Rebecca, now 10 (who recentlyappeared on the BBC See Hear programme).
Rebecca has complex health problems and Nicola talksbelow of some of the difficulties they face in having a childwhom, as she puts it, 'doesn't seem to fit into anycategory'.
Rebecca was born with TOF and OA, and it soonbecame apparent that there would be many morediagnoses of disability, including (to date!):
Rebecca’s current mental age is approximately 18 months -two years. Whilst TOFS provides much needed support, I feltthat there were so many different groups we needed supportfrom - Elizabeth Foundation, National Deaf Children’s Society,Children’s Heart Federation etc. TOFS also gave me details forthe CHARGE Syndrome group.
Unfortunately we have a continual struggle to get the mostappropriate health and education for Rebecca. The mainissues appear to be that professionals don’t treat Rebeccaholistically (that is, as a whole) professionals will not worktogether for fear of treading on each other’s toes. Rebecca ispassive and can easily be ‘left’ instead of receiving her 1:1;professionals will not accept that her deafness and her complexneeds are both a primary need. Therefore, while she needs tobe in a special school, she also needs much communicationinput from Teachers of the Deaf and Speech and Languagetherapists which would be more readily available in a deafschool; professionals try to get Rebecca to fit the system, notthe system to fit Rebecca.
We went through an education tribunal three years ago andwon more than we requested, but we are still battling to haveit all implemented and maintained. We are about to start goingthrough a second educational tribunal.
On a lighter note, Rebecca gains so much from her interactionwith animals - horse riding (she was one six riders chosen toride in front of Princess Anne for the opening of Haworth RDAschool new arena), dogs, Longleat safari animals and cats. Wehave three cats of our own, but we also foster cats and kittensfrom Haworth Cat Rescue. Rebecca loves to pass them theirown toys instead of them playing with hers; they clamber allover her and she shows that she finds their antics very funnyby giggling and laughing uncontrollably. She has since startedpaying more attention to my cats and pesters them beyondbelief.
Editor’s note: Thank you for your kind offer of sharingyour experiences with other TOF families, Nicola. If youwould like to make contact with Nicola, please get in touchvia the TOFS office.
Ann-Marie Offord and Ian Wilsmore writefrom Grays, Essex
Our daughter Alice was born 28 October 1994 with TOF/OA.This year she passed 11 GCSEs (four A*s, six As and 1 B)plus a B in an A/S Level. As well as studying hard for herexams, she was Deputy Head Girl. We are all very proud ofher achievements.
One of the photos attached was taken just before Alice’sLeavers' Ball. She looked beautiful and it was worth all theplanning and expense! Also, to celebrate Alice's brilliant examresults, her sister Laura (13 years) baked and individually icedsome fairy cakes - one for each exam she attained. They weredelicious! Apart from making sure Alice has a drink with meals,she is keeping well and was signed off by the TOF consultantlast year. She has started her A Levels at Sixth Form College,and is hoping to have some driving lessons for her birthday!
Editor’s note: Regular readers will know that Alice and herfamily are frequently featured in Chew, thanks to theirfundraising efforts over the years! Congratulations onyour results, Alice!
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We were delighted to welcome 44 families from farand wide to our 2011 conference in Birmingham. Inall We had 114 adults present (plus more than 30children) and we are indebted to Miss Kapila for onceagain, hosting the day.
This year, in addition to hearing from our esteemed medicalcolleagues, we incorporated more parents’ experiences andheard from adults born with TOF/OA. It made for anaction-packed event in the Holiday Inn just off the M6 inBirmingham.
The conference was efficiently organised by TOFS treasurerSandra Hawkins, with help from TOFS Chair Duncan Jacksonand the office staff. Christine Shepherd, TOFS President, hassummarised the presentations here for those of you whocouldn’t attend and we hope to have a recording available onour website in due course.
Conference Chair Sandra Hawkins chose the hotel because ofits reasonable cost and access to major road networks. Specialthanks to our medical colleagues for giving us their valuabletime and to the parents and adults who spoke at theconference and freely shared their experiences. The individualnature of the TOF/OA condition makes it difficult to cover everyaspect of TOF/OA, but we hope that, if you attended, you wentaway having learnt something and made new TOF friends inthe process.
Tick Tock Mobile crèche looked after 30 children, who had asuper day face painting etc whilst mum and dad attended theconference (with an occasional eye on the Rugby!).
Thanks to the generosity of the delegates who attended,Rachel, Claire and their helpers raised a marvellous £152 fromthe raffle and we raised a further £108.70 from donations forTOFS clocks etc.
Miss Leela Kapila, TOFS Conference 2011Host and TOFS Patron
TOFS Conference 2011
Conference talksLiving with TOF/OA: challengesand experiences
TOF Parents - Rachel Hayes and ClaireCooper-Jones
Rachel HayesMiss Kapila introduced the first speaker who is the parentof Laurie, a child born with TOF and a long-gapOesophageal Atresia. Rachel’s first conference was in 2007which she attended with partner Mark, and 9 month oldbaby, Laurie.
Rachel’s presentation described Laurie’s progress from his birthuntil the present time, focusing on her feelings as a new mum,the difficulties she faced feeding Laurie and the reactions ofpeople who tried to give advice on Laurie’s cough.
Laurie was born at full term, following a Caesarean Section,but all not was well. Laurie was reluctant to feed, he chokedand gagged constantly and Rachel watched his healthdeteriorate rapidly, constantly asking for a doctor to be called.Eventually, at 18 hours old he was diagnosed with TOF and aLong Gap Oesophageal Atresia. Rachel stresses the importanceof trusting your instincts. At 21 days of age, Laurie went homeand appeared happy and contented yet twice during the firstweek Rachel and Mark had to take him to the EmergencyDepartment. Laurie had a barking cough and rattle in his chestand, over the next few weeks, developed a series of chestinfections. At 12 weeks he was readmitted to hospital withpneumonia. Rachel said “That stay I found the hardest of all,he was so poorly; paralysed and sedated, needing life supportand a blood transfusion - there was a real risk we could losehim”. After 10 days, he came home and at last, thrived.
Despite these early difficulties with his chest and breathing, itbecame evident that eating would be the main issue andLaurie has endured many ‘stickies’ over the years, the firstbeing a piece of parsnip that had escaped the food processorat around six months. Eating out was very difficult for thefamily and Rachel avoided eating out with Laurie andavoiding certain foods for fear of him choking and/or gettingthe food stuck in public. Rachel worried constantly thatLaurie would develop an aversion to food as he hardly ate; onlypicking at meals for pretty much the first three years. His firstsurgical removal was at just over four years old - it was appleand this experience really brought it home to him about theneed to chew properly.
Rachel recalled that learning to stay calm during an episodewas one of toughest lessons of all to learn. Every meal timewas an emotional strain and Rachel found that keeping a‘stickie diary’ helped deal with each day and move on withoutdwelling on the past.
Rachel and Mark discovered TOFS when Laurie was aroundseven months old and were astonished that no-one in themedical profession had mentioned TOFS. Both found theinformation on the Forum invaluable as well as giving themaccess to other people who had children with similar
problems and who would be able to help them through theirown experiences. They also found good friends. Both activelycontribute to the Forum, keen to help new parents who findthemselves in the same position as they were.
There have been several challenges to overcome and more toface. Learning how to deal with and manage other people’sreactions to Laurie’s cough was hard, constantly being made tofeel like a bad mother. Rachel said “To be approached by acomplete stranger and advised to take your child to a doctorcompletely knocks your confidence and in the early days I hadso many bouts of “bad mother syndrome” truly believing thatI was a bad mum”.
Rachel returned to work when Laurie was nine months old andfaced the ordeal of how to manage childcare. The family optedfor a childminder. This allowed for 1-2-1 care for Laurie bysomeone who was keen to learn as much as she could aboutthe condition. Now at school, Rachel successfully securedmedical hours funding to ensure that Laurie was supervisedduring mealtimes.
Another challenge for the family was Laurie going to partiesand sleepovers. Rachel wanted Laurie to be as normal aspossible so accompanies him, encouraging him to eat, or atleast try the party food and enjoy it like his peers. He showsreluctance to eat and tends to pick, especially in public, for fearof a stickie. Sleepovers have yet to come!
The biggest decision for Rachel and Mark was whether or notto have another baby; concerned that a second child mightalso be born with the condition. Rachel said “Ultimately, thedeciding factor for me was when I went through a scenario inmy head with Laurie asking why he hadn’t got any brothers orsisters and my answer being “Because I didn’t want anotherTOF”. It was like me saying I didn’t want another him - whichwas completely untrue”. Callum arrived safely sometime later,completely TOF-free!
Laurie is now stronger and with more energy than ever thoughtpossible. His chest has improved greatly and he is morecapable of fighting off infections so the future is looking good.He will always need to take care with eating, but it is hoped asthe years tick by, he will learn to manage and control theepisodes better.
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Claire Cooper-Jones
Claire is friends with Rachel Hayes and, together, theymoderate the TOFS Forum on the website. They havebecome friends since meeting in the early days of their TOFexperience.
Claire is mother to twins, Harrison and Oliver. They were bornat Calderdale Royal Hospital following a planned CaesareanSection at 36 weeks gestation because Harrison’s growth hadslowed down. Although Harrison and Oliver are identicaltwins, only Harrison was born with TOF which was diagnosedwhen he was one day old. Harrison was taken to SCBU to bediagnosed, leaving Claire and Oliver in a single room.
The day after Harrison was born, Claire, Oliver and Harrisonwere transferred to Leeds General Hospital. Claire and Oliverwere on a transition ward for small newborns for two weekswhilst Harrison was in ICU. After two weeks, they were alltransferred back to Calderdale for a week or so, before Claireand Oliver were sent home, leaving Harrison behind foranother five weeks.
Doctors at Leeds checked Harrison against the VACTERLcriteria and found he had a short gap Oesophageal Atresia andTracheo Oesophageal Fistula and 2 VSDs (see glossary on p13).Although Claire had worked with children with Special Needsfor 20 years, she had never heard of this condition, knewnothing about TOF and did not know how she was going tocope. Questions abounded: Will he always be like this? Will hesurvive? Will he lead a normal life? After about four days,Claire broke down in tears.
Initially Harrison was in Intensive Care, then in the HighDependency Unit before being transferred back to the localhospital. After two weeks, Claire was “invited” to leave thehospital and go home. She left with Oliver, but it washeartbreaking leaving Harrison behind. She triedbreastfeeding, but this made Harrison vomit, so Claireexpressed her milk and added thickeners which worked. Therewere lots of worries for the family about what to do in caseanything went wrong. Fortunately, outreach care was providedand Claire had the benefit of nurses calling at her home.
It was three years before Claire was able to go to the park withthe boys on her own. Harrison’s weight gain was very poorand she feels that she helped support the food manufacturerswho make Petit Filous!. This was a favourite and helpednourish Harrison until he was a year old. Claire’s advice toother mums is to follow your own instinct with regard toweaning. Harrison has only been stuck on food once - whenmum, Claire, found raisins in his bed. He has had no dilatations(see glossary on p13) and never been to the EmergencyDepartment. He does, however, suffer from reflux for whichmedication was prescribed and feeds were carefully timed.
During the second year of his life, Harrison’s weight wasdecreasing as he refused food and he continued to suffer chestinfections and pneumonia. A loose Nissens wrap (see glossaryon p13) was carried out and, over the next few months, foodaversion treatment was introduced. Finally, grandma’s chickenstew won the day - Harrison tasted this and decided he likedit.
Harrison is progressing well at school even though he is thesmallest in the class. He is still fed through a tube, but eatsorally as well.
Claire finished by relating her experience to Emily Perl Kingsley’sWelcome to Holland which expresses the journey life takes uson by describing the initial disappointment of a person whohad planned a holiday in Italy, only to discover that theaeroplane landed in Holland. Holland is really nice, actually:but it isn't where that person expected to be; they did not havethe right clothes, and were unprepared for the language.
Editor’s note: We are planning (subject to permission) toput the full version of Emily Perl Kingsley’s Welcome toHolland on our website in due course.
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Adult TOFsGraham Slater and Francesca Liuzzi
Francesca LiuzziFrancesca is a TOF adult who is currently a medicalstudent at Manchester University. She related hermemories and early experiences.
This was Francesca’s first conference. She had met a fewpeople who recognised her from when she was a small childand attended the Nottingham children’s parties, although shecould not remember them.
Francesca’s story begins with her mother who was very illfollowing a Caesarean Section to give birth to Francesca. As aresult, Francesca spent the first two to three years at GOS anddid not see very much of her mother. The nursing care shereceived was fantastic, but she cannot remember much aboutgrowing up as a TOF: it was such a small part of her life thatshe didn’t notice. Whilst in GOS, the nurses used to take herto see the babies and, as she got older, she wanted to returnto “help” the nurses. Perhaps this is what encouraged her tobecome a medical student.
Dilatations (see glossary on p13) became less frequent as shegot older, but she has been told that she panicked in a lift oncewhen she saw a number of nurses and doctors in scrubs, butshe doesn’t remember this herself.
By the age of two, Francesca had learned to fake a “sticky” andperformed her choking regime very well. Her mumreprimanded her for this. At parties, she would remove her “Iam a TOF - do not feed” badge so that she could have sweets.
Graham SlaterGraham introduced himself as one of the oldest TOFs.Graham was born in a nursing home where he was givena teaspoon of brandy before being transferred toManchester when he was three days old. Graham wasbaptised in Preston before the journey to Manchester ashe was not expected to live.
Graham developed a chest infection and lost 2lb in weight (anawful amount for a small baby). On day six, Mr AmbroseJolley operated on Graham and saved his life. This was the first
successful TOF operation in the North of England. Mr Jolleyhad previously been a general surgeon and, before that, aWW2 army surgeon. He went on to become a PaediatricSurgeon.
Graham’s mother was not allowed to hold him until he wenthome after two months. Feeding was difficult as Graham wasslow to feed. He had weekly check-ups for the first year. Nofurther surgery was required and his mother ensured that hisfood was well mashed. Of course, Graham’s grandma was alsovery worried about him and Graham remembers her telling himall about his early life when she was about 75 and Graham 25.
Feeding got better in the second year of Graham’s life and hebegan experimenting with all kinds of things - including coal!
Psychological problems became evident as Graham grew as hehad a fear of hospital environments and screamed whenever hesaw anyone wearing a white coat. It must have been verydisconcerting for the baker.
Graham made good progress and, by the age of five, had onlyhad one dilatation (see glossary on p13) and he was able toeat “proper” food. Of course, the TOF cough is present but,apart from that, Graham’s health is good. There were noproblems until the age of 19 when Graham felt discomfortwhen playing football. A narrowed trachea was diagnosed butGraham was determined not to let this interfere with his sportand decided to become fitter. He hasn’t full lung capacity but,as he has become fitter through sport, the problems havelessened.
At the age of 50, Graham realised that he had reflux.Investigations were carried out but the reflux is not severe and,as long as Graham avoids certain foods, it is manageable.Culprits are black coffee, white wine and meat which is nottender.
Further surgery was carried out at the age of 52 – to repair hisknee as a result of too much running.
Graham became more interested in TOF in the last 5 years. Hedecided to run in the Nottingham Marathon to raise moneyfor TOFS and has promised to complete a Half Marathon whenhe is 60.
Graham feels lucky. His parents did not have the benefit of anorganisation such as TOFS and, until last year, had not spokento anyone else who had had a child born with this condition.The presentation finished with Graham expressing thanks tohis surgeon, patrons, NHS, his parents, wife and family.
Oesophageal Atresia -through the KeyholeGordon Mackinlay
Mr Mackinlay began his presentation with an amusingexcerpt from the film “Doctor in the House” starring JamesRobertson Justice as Sir Lancelot Spratt(http://www.youtube.com/watch?v=oVWjAeAa52o)which makes reference to keyhole surgery.
Keyhole surgery had been pioneered in the USA and MrMackinlay adopted the technique in the early 1990s. MrMackinlay was one of the first Paediatric Surgeons to carry outa TOF repair using keyhole surgery instead of the more usualinvasive surgical technique. A slide was shown which comparedscars of both types of surgery.
When flat screens were developed in 2000, the Edinburghhospital was one of the first to use integrated screens in theOperating Theatre which made operating much easier thanbeforehand. Green lighting ensured a restful environment.
The first successful keyhole operation in Scotland took place on5 July 2001. Keyhole surgery takes less time than open surgeryand the instruments used ensure good visualisation. MrMackinlay described the procedure and provided photos andvideos which showed:
� A good view of internal structures� The ports being inserted� CO2 being used to deflate the lungs� The size of the instruments which are only 3 mm in
diameter� Good magnification.
Advances have been made in relation to the management ofoperations. It is a challenging operation which can besuccessfully completed and avoids long-term morbidity andscarring. It is possible to repair a long-gap atresia using keyholetechniques. The smallest baby operated on using keyholesurgery was at 31 weeks, the baby weighing 1.4 Kg. Anaortopexy has also been carried out by this method.
To date, Mr Mackinlay has carried out 37 keyhole thorascopies -32 in Edinburgh and the rest in other parts of the world wherehe has been invited to demonstrate the method to othersurgeons. Internet technology enables him to demonstrate theprocedure to surgeons in other hospitals in other countries.
Now that we are in the 21st Century, Mr Mackinlay ends bysaying that all surgical procedures should be carried out viakeyhole.
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RefluxTony LanderOur thanks go to Mr Tony Lander who stepped in at shortnotice to deliver this presentation in place of Dr SeanMarven who was unable to attend.
Reflux is a very common problem amongst babies particularlyin the first few weeks of life. For babies born with TOF, however,the problem is somewhat different as the oesophagus is notformed normally and abnormal peristalsis accounts for foodbecoming stuck. Additionally, the gastro oesophageal junctionis often not normal causing reflux.
Doctors treat reflux with medicines, antacids, medicines to cutdown on the amount of acid being formed, and thickeners to beadded to milk. Medication is reviewed but sometimesmedication does not work and, if the reflux is significant, afundoplication operation may have to be carried out.
In a normal oesophagus, some acid will come up but the normalperistaltic wave will clear the residue. Various studies are beingcarried out because there are concerns about the risk of cancerof the lower oesophagus which comes into contact with acidover a prolonged period of time. It is important to haveregular endoscopies to monitor the condition of theoesophagus.
Often a mother knows that her child has reflux. An additionalproblem may be that swallowing occurs at the top end of theoesophagus which can lead to aspiration.
A number of indicators are used when treating reflux:� Aspiration� Failure to thrive� Stricture� Oesophagitis� Vomiting.
Mr Lander described various fundoplication procedures from afull 360 degree to a loose wrap; the ideal wrap being short andfloppy. A laparoscopic approach is ideal.
Tight wraps may cause the following problems:� Drooling� Swallowing� Dysphagia� Gas bloat� In other children (not TOFS), the stomach
squeezes upwards� Retching after food (which is hard to manage)� Build-up of gas.
The long term outcome� The method used is generally dependent upon the
surgeon’s preference.� If the wrap is too tight, the child cannot vomit.
The longstanding risk associated with GOR is a condition knownas Barrett’s Oesophagus which causes cells in the loweroesophagus to change and become cancerous. Mr Landerstressed the importance of ongoing surveillance and suggestedthat an endoscopy be carried out approximately every five years.
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GeneticsCharles Shaw-Smith
Charles opened theworkshop by reference toa diagram he hadprepared which showedthat - according to thelatest research- the knowncauses of TOF/OA includealcohol, medications suchas Methimazole (used forthyroid treatment) whichinclude teratogenic agents
(agents which cause foetal malformation) and certaingenetic conditions. In addition it is known that maternaldiabetes can contribute to the development of VACTERLconditions.
The genetic conditions which are linked to TOF/OA aredivided between:(i) chromosomal defects, notably Trisomy 21 (Down’sSyndrome) and Trisomy 18, though with the latter defect thebaby does not ever survive. There are also other rarechromosomal conditions which can cause TOF/OA.(ii) Syndromes due to single gene faults which include
� Feingold� CHARGE� OPITZ� AEG� ACD
Charles also went onto explain that there appears to be ahigher rate of TOF/OA births amongst monozygotic (identical)twins than amongst the population in general. The reasons arenot understood but researchers suspect that there is somethingabout the process where the fertilised ovum divides intoidentical twins which causes malformation in one of them.
Researchers are also investigating a phenomenon known asthe ‘hidden twin’ where it is believed that identical twins arecreated but that one of the twins is ‘hidden’ because it diessoon after the fertilised ovum divides. It is postulated that insome cases of TOF/OA there may have been a ‘hidden twin’,and it was interesting to note that two of the TOF mothers inthe workshop (one of whom also said there was a familyhistory of twins) reported that they had experienced bleedingin early pregnancy which might possibly result from the lossof a ‘hidden twin’.
Charles also referred to research which has shown a connectionbetween TOF/OA and to a degree of malformation (notablycrookedness) in fore and/or little fingers. One TOF mothercommented that she had had a malformed thumb and thatthe same was true of her mother and maternal grandmother.
In response to a question about possible environmental causesof TOF/OA, Charles reported that a recent University ofNewcastle study into malformation did show weak, butnonetheless statistically significant, evidence that there couldbe a link with certain pesticides.
Charles concluded by stating that there are 23 centres in the UKfor the Clinical Genetics Service and that anyone who felt thatthey wanted to test for possible genetic causes should ask theirGP to be referred to one of these centres.
Rachel Hoban, Specialist Dieticianat Birmingham Children’s HospitalRachel spoke to two groups of parents giving informationon feeding and nutrition for babies and children born withTOF/OA. This is a summary of her talk.
Growth and NutritionIt is very important for new-borns to get good nutrition as:
� They have low nutritional stores� They have rapid growth and development, especially
in the first few weeks� They have rapid neurological development as both
the head and the brain are growing� They have immature body systems that need energy
to work� Good nutrition can have an effect on long term
health.Pre-operative care;
� Most babies are given Parenteral Nutrition (PN)which is intravenously given
Post-operative after a single procedure;� Oral feeds limited initially
And after a two-step procedure;� Gastrostomy feeds� An oesophagostomy will require a gastrostomy tube
fitted� Oral feeds are ‘sham’ fed particularly in long-gap
TOFs. These are given at the same time as a G-Tubefeed so that there is a psychological connectionbetween putting food in the mouth and feeling full.
Establishing Oral FeedsThere are many challenges faced by the TOF and their families,
� Using the oesophagus post TOF/OA surgery� Delay in establishing oral feeds� Oral aversion from repeated gagging and vomiting� Co-ordinating tube feeds and sham feeds are tricky
as more than two hands are needed at one time!
Helpful hints for oral feeding� Positioning baby upright while feeding. Gravity helps.� Use of a dummy to maintain the suck reflex,
especially during a gastro feed. Establish oral feedsas soon as it is safe.
� Allow time for feeds.� Pump feed, instead of a tube bolus, while sham
feeding.
Gastronomy – use of feeds� Mimic feeding patterns and volume for child’s age.
Fully tummy at regular intervals.� Ensure adequate fluid intake.� Ensure adequate nutrition for growth and
development.� Correct time scale. Patient and condition depending.� Patient led oral feeds. Establish when ready.
Specific formulas� Breast milk fortifier for added nutrition and energy� Pre-term formula to help meet nutritional
requirements for energy, protein, vitamins andminerals
� High calorie formula to meet energy needs� Carobel thickener. Thickened milk can help
co-ordinate swallow and minimise reflux.
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Weaning� The biggest challenge is coping with lumpy textures.� The solution is to not leave too late and give plenty
of time for steady progress. Around 6 months isideal.
� May need smooth texture a little longer� Be alert and upright� Co-ordinating sham feeding is a challenge. It is a
positive step that children taste food orally whensham feeding, but you need 2 people to do thissuccessfully.
� It is important to try and introduce family foods butthere may be difficulties with food refusal. This inturn may lead to the child having extra nutritionalrequirements.
� A high calorie formula may be an important additionto the diet
Older children� Some of the feeding challenges are: meeting
nutritional needs, inability to take adequate foodquantities, reflux, strictures, coughs and wheezes.
� Possible solutions are: oral calorie supplements, highcalorie milks, use of ‘G’ feeds for top up if applicable,little and often.
� A cough and wheeze may be caused byincoordination or reflux
� Strictures are common, especially in long gap OA� Reflux can be painful and unpleasant
If your child is…� Slow to feed – pace carefully; don’t rush� Tiring early – feed little and often� Taking inadequate volume – consider suitable food
textures� Suffering reduced oesophageal co-ordination – use a
high calorie formula� In need of increased nutritional requirements – bolus
tube feeds� Getting food stuck due to a stricture – monitor
intake / use a high calorie formula / takes sips ofwater with food / choose soft or pureed food / trybite + melt food types / give food in sauces /encourage to chew well / pace
� Excessively dribbling – pat their lips as wiping canstimulate more dribbling and can cause a rash
Reflux� Symptoms – watery eyes, retching, back arching,
crying, frequent vomiting, feeding aversion and pain� Solutions – Position during and after feeding should
be head up / medication PPI and antacid / thickenmilk to keep it heavy in the stomach
Summary� Most TOF/OA children progress normally� Some children may need support to develop oral
feeding skills� Dietician, Speech and Language therapist and
Occupational Therapists can help to support feedingdevelopment
� Adequate growth is important for health anddevelopment and should be maintained
Questions asked in the Q&A session� How do you encourage children who have food aversion
or are G-tube fed and have no appetite? Ans – make
connections with a Speech and Language Therapist.There was a discussion over the fact that there werevaried experiences of SLT’s.
� Worried about the high fat and calorie food that is beingeaten (in the form of bite and dissolve foods and highcalorie formulas) will it have long term healthimplications? Ans – make sure there is a good mix ofcarbohydrates and proteins / use a multi vitamin / makesure weight and growth are fully monitored and that abalance is reached.
� How do you fill up children who are on Domperidonebecause of the speed of the digestive system? Ans – try‘Slow drink’
� After being G-tube fed for years how can appetiteincrease when a child is left with a small stomach?Ans – eating more can stretch the stomach but thiswill take a while. Gradually increase the portion size ofmeals and snacks.
CONFERENCE WORKSHOPSConference workshop: Transition fromPaediatric to Adult care - John Duffy
The workshop of the transition from Child to Adult care wasled by Mr J Duffy, with John Pearce facilitating.
Mr Duffy opened with a short presentation. He notedamongst other things that adult care tends to be highlyspecialised and offered at a large number of hospitals. Thiscontrasts with paediatric care, which tends to beconcentrated into relatively few centres of excellence,though the staff tend to be somewhat more generalised. MrDuffy noted also that medical/surgical interventions inadulthood tend to be more complex than those undertakenin childhood.
Mr A Lander echoed a number of Mr Duffy’s comments, andadded that he is greatly concerned about poor keeping / use ofmedical records.
Many TOF participants amplified these themes, for instancevoicing frustration with the need to see several specialists (whodo not necessarily talk to each other!) often at several centres.Some cited examples of poor or inadequate adult care, and/orrefusal of GPs to refer adult/adolescent TOFs for furthertreatment or investigations.
Miss Kapila raised a concern over TOFs who had been dischargedin childhood and therefore never handed over from Paediatric toAdult care. Should they ever needcare as an adult, medical recordsmay not be available. It waswidely agreed that TOFs are welladvised to obtain their fullmedical notes upon dischargefrom Paediatric care. It wasgenerally agreed that thetransition of care from paediatricto adult is generally poor, andthat a huge improvement ismuch needed. So that’s quite ajob for TOFS to start working outhow to tackle!
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Post-operative Care and Workingwith parents, Anthony Lander,Birmingham Children’s Hospital
The TOF/OA defect occurs very early on in pregnancy. It ispossible, in some cases, to obtain an ante-natal diagnosis ofTOF/OA. Because of the lack of fluid, the stomach shows assmall or absent. A baby without TOF/OA will drink theamniotic fluid which passes into its stomach which is clearlyvisible when a scan is carried out.
Careful consideration must be given to complications which mayarise:
� The baby may be premature� There may be medical, as well as surgical,
considerations� The baby may be born with additional problems
eg VACTERL, chromosome defects, pyloric stenosis.
A baby born with TOF/OA and/or associated conditions will havea prolonged stay in SCBU. It is important to educate parents whomay be afraid of the tubes, drips, drains etc that they see attachedto their small baby. Parents need information with regard tofeeding and medical staff should take account of the needs of therest of the family, especially other children.
There may be logistic difficulties – the hospital may be a long wayfrom the family home and there may be a strain on long-termrelationships within the family.
Mr Lander then showed a video clip depicting a distended upperoesophagus. This occurs because swallowing cannot take place.The baby takes in fluid but, because there is no continuouspassage to the stomach, the fluid enlarges the top part of theoesophagus.
Careful examination is required to check for other conditions:� Duodenal atresia� Anorectal� Vertebral� Cardiac� Renal and� Limb anomalies.
This list is not definitive and a child may have other conditions.The surgeon needs to consult with other Consultants in the careof the child.
SIGS (Special Interest Groups), for example, speech therapists,may be required to teach a child how to eat solids. A pretermbaby is more than likely to require this.
Mr Lander went on to say how important it is to communicatewith the GP and other medical staff and for the parents to knowwho their point of contact is. A summary sheet showing the CarePlan is useful for all medical staff, especially as the child movesinto Adulthood.
Movement Experiences(Tummy Time!) with Lisa SuttonReport by Sue Lewis-Jones
This was a fascinating workshop and one which was interestingand relevant to parents, grandparents and adult TOFs alike. Lisa
Sutton, an experienced private Paediatric Physiotherapist with aspecial interest in working with babies, gave us valuable insightinto the development of muscle control in the baby and howpremature birth, early surgery, recovery and reflux can impact onthis vital time of development.
Postural control development begins in the womb, where a babycan practise movement, cosseted and protected in amniotic fluid.Full term healthy babies are born with a full repertoire ofmovement sequences but babies who are born before thirty fiveweeks, those who have early surgery and those who experiencepainful reflux, may experience interruption to this vitaldevelopment which is important to correct.
Optimum posture comes from healthy muscles, ligaments andtendons and neutral alignment of joints. Sets of muscles can flexand relax, with opposing pairs being equally strong.
As TOF parents we have all experienced the sight of our babies inintensive care, lying on their backs in their cots or incubators asthey heal from their surgery. Whilst this is obviously necessary, itdoes promote passive extension of muscles. Babies can feel ‘lost’with no physical point of reference.
When recovered, it helps when possible, to hold them in babyslings or to swaddle them to help bring back their flexion controland help them identify where they are. It is important to allowthem some ‘tummy time’ when awake during the day, to helplengthen their tummy and hip muscles and to strengthen theirback, neck and shoulder muscles as they start to push up.
Babies who have painful reflux tend to arch backwards and so arebetter nursed in a more upright position. Modified tummy timecan still be given through use of a baby sling, to exert gentlepressure on the tummy.
This leads on to crawling which is very important developmentallyas it helps build good spatial awareness (very important for mathslater!) and for crossing midline, helping the brain to connect rightand left movements (vital for reading and writing!)
Lack of ‘tummy time’ impacts on the development of shoulder,pelvic girdle and core strength muscles. Ultimately, it impacts onthe development of good postural control. A child or adult withpoor postural control will have difficulty carrying out a physicaltask and may seem clumsy.
It takes seven years of constant refinement to achieve automaticpostural control. Good postural control allows for good spatialawareness and one very important thing for TOFs to take accountof, is that good posture also makes for good swallowing! (Whymake swallowing more difficult by slouching?!) Lisa pointed outthat children copy adults, so she suggests that we model thepostures that we want our children to adopt.
For older children, Lisa recommended tummy time through slowand controlled rolling over a therapy ball; wedges for sitting andkneeling to assist stability; pushing activities to activate flexormuscles; lying on scoot boards or skate boards and propellingalong to improve core stability; bilibo seats; wobble cushions forsitting, kneeling or standing to improve balance awareness.
All of these can assist children gain better posture, movement andsensory integration and so gain greater success with gross andfine motor activities. For adults, Pilates classes with a trainedinstructor is very good for promoting core strength andalleviating poor posture, back and hip problems.For more information do look at Lisa’s website:www.firststepsphysio.com
Navada’s Night of MusicOn 4 August 2011, a fundraiser washeld for TOFS. Inspired by NavadaHaggart and organised by Navada’scousin, Calvin Crichton, a 'Night ofMusic' went ahead in Dexters Bar,Dundee. Bands from all overDundee and beyond came to playin honour of TOFS and made thenight a huge success.
The bands - Upsiders, Shoogar, Cha ChaHeels, One Weeks Notice and Lost City - all played to thecrowds who had turned up in droves - a great time was had byall and the final total raised was £860 for TOFS.
Navada’s mum Shona tells us:
“Calvin is 15 years old and attends Craigie High School inDundee and myself, Navada and Paul would just like to sayhow proud we are of him for taking the time andcommitment in organising this event, from securing thebands to the venue and tickets.
Navada is now nine years old, she had a Nissen’sFundoplication (see glossary on p13) when she was four andthings really settled down for her until about 18 months agowhen she started suffering from really bad tummy pains andbouts of feeling sick (she cannot be sick because of theFundoplication) and just wondered if any others areexperiencing these problems.
Navada had yet another scope two weeks ago in Edinburghand although everything looked okay, biopsies were takenand we are still awaiting the results. She has been put onvarious medications, but nothing seems to be helping. Thisis an everyday occurrence and although it may only lastshort periods it is still quite worrying.
Navada very rarely complains and just gets on with things.She is doing really well at school, although she has had agood few days off because of this, which in itself is not ideal.We would really appreciate any feedback from otherparents on this.”
Editor’s note: Has your child experienced issues like thosethat Navada’s mum has outlined above? If you would like toshare your experiences and tips, please contact Shona via theTOFS office.
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Fundraising newsand storiesKeep up, Dad!TOF mum Anna Barker recently wrote to us to tell us about thefundraising achievements of her son, Alexander (who is fourand was born with TOF/OA). She says:
“Alexander completed the Mini South Run in Portsmouthon Saturday 29 October, a 1.5km race for 3-8 year olds. Heran all the way - with his dad trying to keep up!
He was sponsored by all his family and friends in order toraise money for TOFS and raised £245 (£288.75 includinggift aid, through the Justgiving website -http://www.justgiving.com/Anna-Barker27.”
The Big TOF Scoff!TOF mum Kim Smith wrote to tell us about her son Hugo Smithand his friend Frances Unsworth who recently completed asponsored Big TOF Scoff to raise money for TOFS! She explains:
“The idea was to celebrate how far they have both comewith their eating, as they both used to struggle. They havehad very different journeys along the way, but have bothmade such fantastic progress. So we decided to do a jointTOF SCOFF at Pizza Hut where they could eat as much asthey wanted and we would raise as much money as wecould for this fantastic charity that is so close to all ourhearts. They both did amazingly well and between themthey managed to eat half a pizza, half a plate of pasta, arange of salad and garlic bread.
Hugo and Frances first met when they were both born andtreated in the RVI in Newcastle. They both spent months inintensive care and then with thanks to the TOF forum wecame across each other and were really glad to get back incontact with each other. In total we managed to raise £280for TOFS!”
We’d like to thank:� J Earl - £50� Endurance GB - £20 donated in appreciation of Mrs Pollock
allowing them to use her private land� Rotary Club of Banstead - £150 raised by walkers Leah,
Aisling and Sarah Meldon� Libby Styles, sister to Joseph born with TOF/OA, and friend
Alice - £15 raised by making and selling ‘friendshipbracelets’ and explaining to buyers about the TOFCondition
� Autodata Limited - £250� The London Marathon Ltd - £5� Sharon Carver, friend of TOF parent Suzanne Thorne - £20
raised by holding a charity card party� Kathy & Phil Barnsley - £50 donated to mark the 50th
golden wedding anniversary of John and Felicity Anderton,grandparents to Joel Anderton.
200 club winnersJudith Bland - September winnerSarah Green - October winner
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needs your help in2012!
TOFS started 2011 with a healthy amount of money, whichwas one very positive outcome of your superb efforts inthe highly successful awareness week in late 2010. Weplanned to spend some of this ramping up activities in2011 – and that’s what we have done. We have maintainedour conferences and had far more events (Coram’s,Newbury, Kirklees, etc, etc) than for a long time: and weare more actively engaged with the medical professionthan for many years.
We break down the income of TOFS into four categories:membership, other donations from members, fundraisingevents, and grants from trusts. Each point on the chart showsincome for the relevant one category over the previous 12rolling months. You can see that membership and otherdonations have been generally increasing slowly, which isgreat: but money from grants and from members’ fundraisingevents, having done brilliantly in late 2010, is now falling.
Though TOFS receives no public-sector money, we do manageto get some grants, for instance from the Big Lottery fund,which paid for the first ever adult TOF conference in 2010. Butit is becoming more difficult to get money from these trustfunds.
To keep TOFS going at the current rate, we need to increaseincome in 2012. We have just agreed a 2012 budget: TOFSplans to spend a total of some £74,000 and get income ofsome £68,000. This will spend up the last of the 2010 surplusand should leave TOFS at the end of 2012 with enough moneyto run itself for six months, as recommended by the CharityCommission.
Please help by raising some of the £68,000 that TOFS needs in2012. We are hoping for £28,000 from members’ and friends’fundraising in 2012. That’s a lot more than 2011 (about£21,000) but far less than 2010 (£33,000) when we last reallyasked you to help.
We are planning an awareness week in 2012, between 21 and29 April. This is a week when TOFS asks you to organise allkinds of local events and activities to raise money and to attractthe attention of your local newspapers. The dates include the
London Marathon and our Coram’s Fields children’s party. Weexpect to have an “official” TOFS sponsored runner in themarathon, but if you are planning to take part in this or anyother major event, please get sponsored for TOFS! The officecan send you forms, a T Shirt and offer other support.
There are thousands of fundraising ideas out there - and manyhave been featured in Chew. They don’t have to be mega -complicated. Many people raise money for TOFS at coffeemornings, cake sales, raffles, and so on. Some members makecollections (the office has a fleet of buckets) - having gotpermission or a licence first.
Some do sponsored events such as bike rides and runs. Justmake sure you stay safe and legal.
Don’t forget to give the office at call to tell us what you arethinking of doing and to get more help and advice.
All aboard at Kirklees!Great fun was had by all who attended our recent event atKirklees in West Yorkshire. As you can see, ten families tookpart in this fun day out. While the weather was on the wetside, everyone enjoyed their journey on the Kirklees LightRailway through the Pennine foothills – and the kids enjoyedthe play area! Thank you to Sheila Jackson, mum of TOFSChairman, Duncan Jackson for liasing with Kirklees on ourbehalf.
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Adult tofsFrom TOF child to doctorI am Francesca Liuzzi, aged 23 and a Medical Student at theUniversity of Manchester (home is Cornwall). I was born withTOF and OA in 1987 and my primary repair at Great OrmondStreet in London where I was cared for until moving toNottingham and the Queens Medical Centre when I was twoyears old. I also have a VSD (ventricular septal defect) (seeglossary), scoliosis of the spine and had right femero-acetabular impingement (a hip complaint) which I believe –although this has not been diagnosed – fulfills the criteria forVACTERL/VATER association (see glossary). Subsequently Ispent a fair amount of time either in hospital or outpatientsclinics while growing up, although the majority of mydilatations (see glossary) were before I can remember.
Having spoken to other young people who spent considerable timein hospital as a child, I realised I was a little strange: most hatedit, but I actively enjoyed my time there and often asked my mumwhen we would be seeing all the doctors and nurses. I suppose toa large extent that shaped my career choice. Hating hospitalgrowing up would have made my life miserable and it is onlythrough the kindness and skill of the staff treating me that I hadsuch a happy childhood.
I’d always worked hard and done well at school and left with 5A*sand 6As at GCSE and AAB in my A-levels. However it was not untilI started medical school, which is what I believe is my true vocationin life that I really excelled. So much of my degree (and assess-ment!) involves communication with patients and their relativesand my first hand experiences have enabled me to empathise andperform well in these areas meaning I am on track to graduate inthe top 2% of my 500 person year group. I am now under a yearaway from qualifying as a doctor, and would like to work in eitherobstetrics or paediatrics – an easy link to see.
That said, it hasn’t always been easy; my mum raised me as asingle parent on benefits and I know she really struggled at times.TOFS provided a fantastic support system for her and I remembermany weekends spent at Sue Lewis-Jones’s house playing with herchildren, providing a sense of normalcy for both mum and I.
My TOF/OA hasn’t ever held me back, although my VSD didprevent me joining the Navy which I would have liked. The onlyother thing that bothers me is my scar and my cough: sometimesif I laugh suddenly I make that awful ‘TOF-cough’ sound which isquite alarming if you don’t know what it is and people can be quiteimpolite about it. The musculature around my scar is often sorealthough this has been less of a problem in recent months, and itis my understanding that the scars these days are far smaller (mineis across the entirety of my right shoulder blade). Aside from that,I have lived a normal adult life, having a gap year teaching Englishin Africa and spending my time at University working hard andplaying harder, and in fact credit my experiences with making methe person I am today.
I hope anyone reading this, worrying about the future for theirchild as they grow up takes some comfort from my experiences.Obviously every TOF/OA baby is different, but it is possible to livea normal, happy life and achieve everything you want to and more!
Editor’s note: Francesca shared her experiences at our recentconference. You can read an account of her talk on p6.
Keeping track of your medical recordsIf you attended our adult TOF conference last year, you mayremember a discussion about the value of retaining and accessingmedical records. We’ve had some responses since then and haverecently heard a positive story on the issue from TOFmum, Jill Bozdogan, who says:
“My daughter Nicola is 30 years. Since she is now living inAustralia, she decided 18 months ago to see if she could obtain herrecords from GOSH. She applied and was told they were still there,paid £50 and a photocopy of the records some 50 pages were sentto her in the post. I am assuming GOSH keep the records for longeras she hasn't had any treatment for her TOF condition for 17 years.A wonderful idea to promote this. You never know when theymight be needed.”
An adult TOF shares her inspirationWe recently heard from one of our longest standing adult TOFmembers about their experience of hearing Professor Morice speakat our adult conference last year.
“May I say a huge thank you for all the work you are doing and inparticular for myself. On hearing Professor Morice speak, I can onlydescribe it as a Eureka moment for me with his description of areflux cough. I had been taking 20mgs of Omeprozole for about12 years and was fairly comfortable. I had classic symptoms ofreflux cough but thought it was just me, and was something I hadlearned to live with. When Chew was published with a report ofthe conference I visited my GP and asked if I could have a referral.This was arranged and in May I travelled up to Hull with mydaughter.
Professor Morice put me on a regime of total acid suppression fortwo months, then if I was still coughing, adding another drug fora month then changing it for another for a month and lastly athird. After only a short time I noticed a vast improvement insymptoms - no reflux, no burping, and little cough, plus an addedbonus that if I ate my evening meal late, if we had been out, I didnot have heartburn in the wee small hours.
Please therefore continue the good work you are doing both withthe little ones and their families and also the not quite so young.”
GlossaryDefinitions of technical and medical terms mentioned in someof our articles and family updates
Dilatation: a procedure undertaken to widen a narrowing ofthe oesophagus (stricture).
Gastrostomy: a way of taking in nutrition through agastrostomy tube, a specially designed tube through which ababy or child can be fed. It is inserted through the skin directlyinto the stomach.
Reflux or Gastro-Oesophageal Reflux (GOR): the acidicstomach contents pass back into the lower oesophagus. This cancause pain, a reluctance to eat and possible problems later in life.
Nissen Fundoplication: this procedure is commonly used toreduce Gastro-Oesophageal Reflux (GOR). The lower oesophagusis freed up and the top part of the stomach (known as the‘fundus’) is wrapped around the lower oesophagus to make avalve at the junction of the oesophagus and stomach. The holein the diaphragm through which the oesophagus passes may alsobe tightened.
Ventricular Septal Defect (VSD): a defect in the wall di-viding the lower chambers in the heart so that the movement ofoxygen from the lungs to the tissues is inefficient. The circula-tion in the lungs is also subject to abnormally high pressureswhich can be damaging.
VACTERL Association: the term ‘VACTERL’ describes a groupof anomalies which can occur together in newborn babies. It isan acronym for: Vertebral (spinal) defects, Anorectal atresia(failure of the anus and lower end of the gut to form), Cardiac(heart) defects, Trachea-oesophageal fistula with or withoutEsophageal atresia (American spelling of ‘oesophageal’), Renal(kidney) anomalies and Limb defects.
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EAT Foundation Day update
In recent issues of Chew we have written about theintention to establish an international association ofTOF/OA support groups known as EAT. The association isnow formally founded; TOFS Trustee and Hon. Secretary,Graham Slater reports below.
On October 22, a meeting of EAT (The Federation ofEsophageal Atresia and Tracheo-esophageal fistula supportgroups) was convened in Stuttgart, Germany.
Representatives of the six European TOF/OA support groups(representing Austria, France, Germany, Holland, Switzerlandand the UK) who are founder members of EAT were presentwhere the federation’s Articles of Association were agreed andthe founding documents were signed.
I am proud and honoured to report that I was confirmed asthe first Chairman of this new organisation, and that I was ableto chair the first Board meeting of EAT on the same day. Theother elected members of the EAT Executive Board are: Jo-AnneFruithof (VOKS, Holland) as Vice-Chair, Anke Widenmann-Grolig (KEKS Germany) as Treasurer, Evelyn Svoboda (KEKSSwitzerland) as Secretary and Frederic Armand (AFAO, France).
EAT will be based in Stuttgart and co-located with KEKS whohave generously agreed to provide office space and accom-modation when the EAT Board holds its meetings (expected tobe three times per year). Anke Widenmann-Grolig, who is alsothe Treasurer of KEKS, has been instrumental in ensuring thatEAT is formally established under German regulations and thatEAT’s objectives - as enshrined in its Articles of Association -are compliant with charitable status and the associatedfinancial benefits which German tax law permits. This processhas also been a great test of my (reasonable) knowledge ofGerman and I have also benefitted in this regard from thecoincidental fact that KEKS are currently providing workexperience to Emily, an English modern languages student whois spending the current academic year in Germany and France.
In subsequent issues of Chew we will keep you informed ofEAT’s plans and ideas, which include the intention to raise theprofile of the TOF/OA condition across Europe, and to providesome more focus on our adult TOFs. In particular the subject oftransition from child to adult care is an issue which is sharedby all the support groups who are members of EAT.
From left to right: Frederic Armand, Evelyn Svoboda,Joanne Fruithof, Anke Widenmann-Grolig, GrahamSlater.
Guidance on food textures for children
A topic that is regularly discussed on the TOFS online forumis food textures. As the discussions on the forum show, everyTOF child is different and has different needs. But you maybe interested in a short guide to different food textures forchildren. Based on the knowledge of Anna Groom, a Special-ist Paediatric Dietitian, the guide provides a brief overview ofdifferent foods, from bite and dissolve foods to foods thatprovide valuable chewing practice. You can view the guidehere:
Adult TOF survey resultsGraham Slater,Secretary, TOFS Council of Management
Following last year’s Adult TOF conference, we receivedresults from a survey of about 40 of our adult TOFS whohad agreed to answer a series of questions about theirproblems and experiences, both as children and as adults.This is of course hardly a big sample size and it is also likelythat this sample of adult TOFS reflects the fact that thosewho attended the conference last year and subsequentlyanswered the questionnaire do have ongoing difficulties.Nonetheless it does provide an interesting insight into thetypes of problem our adult TOFS have. It provides someevidence for a number of issues which have been raised byour members, and reveals both some expected and somesurprising results.
Notably swallowing and chest problems figure highly amongstchildhood problems, and whilst reflux difficulties become moreof a problem as an adult, it is chest problems which feature asthe most frequent ongoing difficulty. The majority experiencedproblems with education, but as adults only about a thirdexperience problems which affect their ability to work. This ofcourse remains a high proportion who can face economicchallenges on top of their ongoing health issues. The problemof a lack of TOF-aware medics is confirmed in these statistics;on a more positive note almost all the respondents are able todiscuss their issues with family and friends, and whilst they alsoreport that their condition did affect family life when they werea child, most respondents (with one or two exceptions) appearto have experienced a generally supportive family environment.
We would be very interested in conducting or supporting afurther and more extensive study, possibly one which is carriedout as part of an academic research programme. In themeantime if there are any adult TOFS who did not respond tothe survey and would like to do so, please contact the TOFSoffice.
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TOFS North West eventOn Sunday 18 September, North West TOF families had theopportunity to meet up over coffee and cake. The event,held in Blackburn, Lancashire brought together 13 TOFfamilies, all members of TOFS. Most had previously metvia social networking and the TOFS forum, so it was greatto put faces to names.
Our thanks to Kay and Gary Leech, parents to Harriet (agethree), who organised the event very efficiently on behalf ofTOFS. Kay and Gary are keen to build a support network in theNorth-West. The children were entertained by Tricky, thechildren’s entertainer, who kept them busy with magic,balloon modelling and disco.
Kay pictured (centre) withJanieve Petruzis (L) and JodyBuckley (R), fellow TOFmummies, hosted the eventat her local church hall. TOFadult and TOFS trusteeGraham Slater attended theparty (after a fraughtjourney from the TOFS COMmeeting in Nottingham).Coffee and refreshmentswere courtesy of LilBubba Things (Facebookcompany) who donated£30 and homemade cakecourtesy of RachelHadfield. Yummy!
DecemberCharles Palmer 31/12/1995 Carrissa Page-Best02/12/1996 Amber Wright 04/12/1996 Joshua James14/12/1996 Lauren McCann 20/12/1996 Emily Boyce25/12/1996 Alexandra Dickinson-Lomas 26/12/1996Joshua Banks 30/12/1996 Callum Smith 08/12/1997Fergus McDonald 02/12/1998 Lucy Thompson04/12/1998 Kristie Rolfe 05/12/1998 Seth Alun-Jones12/12/1998 Tina Taglieri 17/12/1998 Jacob Eckstein09/12/1999 Jae Dworzanski 22/12/1999 AlexanderBardini 30/12/1999 Jonathan Maze 08/12/2000 SophieWakeley 14/12/2000 Ben Cowling 30/12/2000 ElliotBartrum 14/12/2001 Ioli Heskes 06/12/2002 FelicityBrown 11/12/2002 Erin Nicoll 14/12/2002 Freddie Ellis-Batchelor 19/12/2002 John-Carlo Hanratty 12/12/2003Joe Whitham 02/12/2004 Jasmine Rose 11/12/2004Archie Muir 17/12/2004 Harriett Cole 05/12/2005Ethan Reynolds 08/12/2005 Daisy Fuller 14/12/2005Lucy Hutchinson 20/12/2005 Leo Allen 25/12/2005
JanuarySamiyah Jaman 15/01/1996 Shelley Myriam Gutjahr20/01/1996 Ellen Fretter 04/01/1997 Abigail Gillespie06/01/1997 Mason Webster 21/01/1997 JamesMorrison 23/01/1997 Colette Wylie 25/01/1998 AmberCampbell 12/01/1999 Laura Strain 18/01/1999 LydiaBlackburn 09/01/2000 Molly Slack 15/01/2000 BenTaylor 19/01/2000 Amy Norman 28/01/2000 LauraJackson 04/01/2001 Ibrahim Meziane 16/01/2001 JackStewart 03/01/2002 Chloe Dale 07/01/2003 NiamhKettleborough 17/01/2003 Sean Keith 19/01/2004 SamPetherbridge 28/01/2004 Ryan Fido 28/01/2004 DanielAgar 30/01/2004 Gagan Panesar 30/01/2004 DaisyMarshall 03/01/2005 Grace Dorsey 07/01/2005 CharlieLashmar 11/01/2005 Liam Buisson 17/01/2005 OliviaMedd 20/01/2005 Jessica Lindley 31/01/2005 JamieRimmer 03/01/2006 Jack Dillon 30/01/2006 SamanthaBerk 31/01/2006
FebruaryTallulah Grant 14/02/1996 Benjamin Platten 02/02/1998Adam Michael 03/02/1998 Tyler Willis 13/02/1998 LydiaCooper 03/02/1999 Alexander Haynes 06/02/1999 OwainRoberts 07/02/1999 Liam Graham 12/02/1999 Oliver Hatton18/02/2000 Benjamin Evans 06/02/2001 Rebbecca Slator07/02/2001 Cameron Sheppard 06/02/2002 Alicia Godwin25/02/2002 Holly West 27/02/2002 Sacha Kobovich17/02/2003 Ned Melland 21/02/2003 Brooklyn Roberti05/02/2004 Thomas Gluyas 10/02/2005 Nurah Maddar10/02/2005 Kinsley Martinez 23/02/2005 Joshua Smith03/02/2006 Oliver Rickards 08/02/2006 Freddie Stevenson17/02/2006 Suraiya Mirza 21/02/2006
Happy Birthdayto all our TOF-OA Children.Children six years and above are listed below, under sixes willreceive a birthday card.
Humidifier availableWe're now full swing into the virus and cold season and someof you have discussed if humidifers make a difference for yourTOF children in our online forum. The discussion has rangedfrom how humidifiers have helped relieve TOF coughs and alsocold symptoms to the best type of humidifier to buy (Visit:http://www.tofs.org.uk/index.php/forums/viewthread/938/ tofind out more).
One of our members who lives locally has kindly donated herBionaire WarmMist Humidifier. Would this be useful to you? Ifso, please collect from the Nottingham office or if we're toofar away, just contact us and we can arrange to have it postedto you.
Found property at Birmingham ConferenceDid you leave a M&S checked shirt (belonging to a seven-eightyear old) at our conference? Please contact the TOFS officeand we'll arrange for them to be posted to you. Thank you.
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.
support for familiesof children born unable to swallow
tofsTOFSAddressTOFSSt George’s Centre91 Victoria Road,Netherfield,Nottingham NG4 2NN
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
The views expressed in Chew are not necessarily those of theeditor or the Council of Management.
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TOFS Council of Managementmeeting - SeptemberGraham Slater, TOFS Trustee and Hon. Secretary
The Council of Management held its most recent meeting on SundaySeptember 18. Our busy agenda included discussions on thefollowing:� Progress on the October conference including a review of the
programme and plans for another reminder email to all members.� We discussed provisional plans for events in 2012 which
hopefully will include an adult TOF conference, children’s partiesin a number of regions including a repeat of this year’ssuccessful event at Coram’s Fields and another Awareness Week.
� We also discussed ways in which we might better take advantageof, and integrate with, social networking sites such as Facebook.
� We reviewed progress on work towards the publication of a GPLeaflet for Adult Tofs and the outstanding work to complete anew edition of The TOF Child.
Key dates in the TOFS 2012 calendarCOM meetingsSunday 15 January 10.30am at TOFS officeSunday 4 March 10.30 (teleconference)Sunday 13 May 2012 (and AGM) at TOFS office, time tbcSunday 8 July 2012 (teleconference)Sunday 8 September 2012 at TOFS office18 November 2012 (teleconference)
TOFS AGM - Sunday 13 May 2012 at TOFS office - All memberswelcome
TOFS Awareness Week22 April 2012 until 29 April 2012 - Raise a Tenner for TOFS
Children's partiesNorthern Ireland - subject to demand - date tbc - Register yourinterest now on 0115 961 3092Scotland - Edinburgh Saturday 17 March - Register your interest nowLondon - Coram's Fields Saturday 28 April 2012Northern England party (exact venue to be confirmed) Saturday 2June 2012
Medical eventsRCPCH starts 22 May 2012EUPSA starts 13 June 2012
And for the adults...TOFS Adult Conference Saturday 15 September 2012, ReadingTOF Adult Get Together - Saturday 31 March, 2012, East Midlands
To book your place on any of our events, please call us now on0115 961 3092 or email: [email protected]. You can find moredetails of events at:http://www.tofs.org.uk/index.php/tofs_events/dates_for_your_diary
