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tofs chew Autumn 2011

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

Pictured: Happy snappy! Young TOF Oliver enjoys a little time in the paddling pool at home! Read his story on p2.

Inside 

  

Last chance to book for the 2011 TOFS Conference! TOF mum does online survey TOFS at BAPS Family and adult TOF news

...and much more!

Have you updated TOFS with your latest mobile phone number and email address? Please do to help us stay up to date!


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From the editor... Welcome to your autumn 2011 issue of Chew!

WELCOME

A warm welcome to our new members! 

We hope that your autumn has started well. Ours is set to be very busy, with our next children’s conference just around the corner and plenty of other events planned! See inside for more details. Also in this issue, read up on a study and a survey both focusing on TOF - and get up to date with adventures at the Newbury Racecourse!



Thank you for your continued support and for sending in all your news. Please keep your stories coming in (photos in digital format please!).We look forward to hearing from you soon!



Camilla Zajac, Chew Editor

  

Keri Patton and Philip Harris from Co. Down - Blake born 06/07/10 Lisa and Andy Malcolm from Worthing - Joel born 19/01/11 Tina and David Perry from Isleworth - Luca born 19/03/11 Kelly Doig from Dundee - Sam born 12/05/11 Sharlene Di-Giosaffatte and Christian Gratte from Australia - Coopah born 08/06/10

   

     

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

Cover story: Oliver Cobden

Our smiley cover photo is of young Oliver Cobden. His mum, Cath, recently shared his story with us: Oliver was born on 14 July 2009 at 38 weeks weighing a healthy 3.44 kilos. We have just celebrated his second birthday. We were told we were having a baby boy and he would be a little brother for our three other gorgeous children Ben, Elliott and Amy. Not long after he was born, we were told that Oliver did have a pure long-gap oesophageal atresia without a fistula and he would most probably spend several months in hospital before undergoing surgery in a few months time! The following morning he was taken into theatre for his gastrostomy (Please see glossary on p11) to be inserted, but was back in intensive care before lunchtime for our first proper visit. He spent five days in intensive care in the Trevor Mann Baby Unit before being transferred to the Royal Alexandra Children’s Hospital (our second home) to begin the journey of making him big and strong enough for his surgery. Oliver’s surgery took seven hours! He was transferred back to Trevor Mann for intensive care and three days later, was transferred back to “The Alex” to recover and start the process of feeding! Oliver was back in hospital every two weeks for dilatations (see glossary on p11). In February 2010 he started to vomit after every feed and just wasn’t the same settled baby he had been, so after a visit from my health visitor I took him back to “The Alex” where they admitted him with a chest infection caused by reflux and aspiration. His surgeon came to see us and said he would need a Fundoplication operation very soon. He is now a two year old cheeky, but very happy toddler and his dilatations are now 10 -12 weeks apart. He is still on his medicines. The ‘terrible twos’ have certainly started, but we can’t help letting him get away with the small things as he is so precious.

I was very honoured recently to be asked to become a volunteer event organiser for TOFS in the West Sussex area and I am pleased to announce I have organised a TOFS Children’s party for 12 November 2011. We have booked “Robbie the Magician” as an entertainer for the children and Oliver’s surgeon and registrars will be delivering a talk on TOF and holding a question and answer session afterwards (See events page on p6 for full details). I personally would love to meet other TOF families and share all our stories! I would like to end by saying that we have received - and still receive - the most amazing support from all the surgeons, doctors, nurses and staff at The Royal Alexandra Children’s Hospital, TOFS, community nurses, health visitors, dieticians and especially our families and friends and we would like to take this opportunity to thank them all from the bottom of our hearts.


TOF mum does online survey

50

My TOF child was the

40 30 %

TOF mum and academic Dr Martina Meincken recently carried out a survey using our very own TOFS Facebook page. (See some of the results represented on the right.) Dr Meincken had followed posts on the TOFS community forum and the TOFS Facebook page and recognised how much she had in common with other mums. She says "I just wanted to find out how far those commonalities really went - pure curiosity, no scientific interest".

3

20 10 0 first

fourth

twin

40

30

20

10

0 <30

80

30-35

35-40

>40

Lifestyle

70 60

%

50 40 30 20 10 0

l l r king alcoho rd work norma healthy tressed embe smo s a ha rem t ' extr n do

Mother's weight 50

40

%

30

20

10

0

normal

slightly overweight

overweight

Mother's diet 80

60

%

I am originally from Germany and after my MSc in physics, I went for a six-month internship to South Africa. That was in 1998 and I am still here. After a PhD in Polymer Science, I am now working in the Department of Forest and Wood Science, teaching physics and bioenergy. I got married to a South African German and now have two girls, Rebecca (now three) and Alexandra (pictured below) who was born on September 11 2010, 4 weeks premature with TOF/OA and slight anal deformations. They immediately sent us to a bigger hospital in Cape Town, where she was treated by the specialists - and they really did an amazing job! Alexandra started eating baby food at four months and now at 11 months, she is desperate to eat what we eat. She has been going to crèche since she was four months old and she loves playing with the other kids. Although she is rather small, she is quite a tomboy.

third

Mothers age at birth

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

Dr Martina Meincken writes from South Africa:

second

%

Martina asked members of the TOF Facebook group to complete her online survey in July 2011; she had 85 responses, indeed some of you may well have taken part. As we understand it, the point was to try to see if - amongst the TOF online community - mother's "lifestyle" factors might be associated with TOF babies. As Martina says, her survey results are in line with most of the medical literature - there does not seem to be a connection. The survey also found, amongst other things, that 48% of the respondents' TOF babies were premature. Martina's complete write-up is available online, as noted below. Obviously Martina's survey is not a perfect scientific study - the respondents were not randomly selected, for a start. But it is, at minimum, a useful illustration.

40

20

0

Good mix

meaty

vegetarian

In all the charts above, the vertical axis is showing the % of respondents who gave the answer shown.

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


Family updates and news 4

Breathlessness and other issues: Can you help?

We recently heard from TOF parents Nasreen and Nicky Hussain who live in Hammersmith. They were concerned about a recent change in their child and wanted to know if any other TOF parents had had a similar experience. If you have and would like to let Nasreen and Nicky know, please contact them via the TOFS Office. Our son, Abdur Rahman is eight years old and was born with TOF and OA. He had a Nissens (see glossary on p11) at 18 months old. Abdur Rahman is eight now and still underweight, but other than that he is full of life and always smiling. He came 3rd in the beanbag race for schools sports day. I wouldn't change him for anything. Recently, Abdur Rahman had his tonsils taken out. I have noticed that he has started to get very breathless whilst talking and takes very deep breaths during conversations. He also has started to drink a lot more during mealtimes and throughout the day. I'm not sure if this is normal and wonder if there could be a reason for this? Has anyone else noticed this in their child? If so, please let me know. We are members of TOFS and we love getting the newsletters through the post. The charity and the website was one of the best things I discovered when Abdur Rahman was a baby. I had never heard of TOF and watching him going through reflux and all the eating issues was really tough. Reading other people’s stories and experiences helped me get through the first three years. I remember reading other parents’ comments and they said “Stay strong there is a light at the end of the tunnel.” - and there is.

Maxine Pollock writes from Coventry:

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

A few months ago, Edenʼs brother and sisters decided to do a sponsored swim to raise money for TOFS. Cora, Ben and Lexie swam non-stop for an hour to raise money.

They went around to family and friends to get sponsors and raised a total amount of £800 for TOFS which they were delighted with. We are so very proud of them for their efforts and their interest in Edenʼs condition. We wanted to raise money for TOFS who we all respect for always being there to help families who are affected by the condition.

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




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Last chance to book for 2011 TOFS Conference!

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Don’t miss out on your final chance to join us at our conference on Saturday 15 October! Simply complete and send in this booking form today.

Please list below the names of members and friends attending ............................................................................

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

Please list below b o o k i n g c o n t a c t information Name: .......................................................................... Address: ............................................................................

............................................................................ ............................................................................ ............................................................................ Email: .................................................................. Phone: .................................................................

Please complete this section only if crèche facilities are required. List below names of children up to 10 years requiring a crèche place during the Conference - note numbers are limited (NB please include any relevant medical information on separate sheet). £10 (first child), £7.50 (second child) £7.50 (third child)

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

£10

Age…………….….

£7.50

Age………………..

£7.50

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

Name:…………………………………………..............

Total enclosed - please make cheque payable

to TOFS (Delegate cost + crèche, if applicable)

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

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

Transition from Paediatric to Adult Care Feeding the TOF Child

Early Positioning & Movement Experience. (How to deal with the world.) Please let us know if you have any special needs for the conference (eg wheelchair access), and, if you are bringing children, please let us know the sorts of foods they can eat: ....................................................................................................................................................................... ....................................................................................................................................................................... ....................................................................................................................................................................... If you have any objection to photos being used in CHEW or on our website please indicate: ................................................................................................................................................................. Please list below any questions you would like answered by our medical panel (continue on a separate sheet if necessary) ....................................................................................................................................................................... ....................................................................................................................................................................... ....................................................................................................................................................................... .......................................................................................................................................................................


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Newbury Family Fun Day - 31 July

TOFS Events

By John Pearce, TOFS Trustee

To book your place on any of our events, please call us now on 0115 961 3092 or email: info@tofs.org.uk. You can find more details of events at: www.tofs.org.uk/index.php/tofs_events/dates _for_your_diary 2011 TOFS Conference, Saturday 15 October, Holiday Inn, Birmingham M6, Jct 7 Last chance to book! Fill in the form on p5 and send it back to us today!

The sun shone for TOFS members at Newbury Racecourse - and that made for a great day out for a large group from TOFS. The racecourse had kindly invited TOFS members along to take part in its annual “Family Fun Day” - a day of racing with many child-friendly activities thrown in. The racecourse very generously offered free tickets for TOFS members and also made a “pavilion” space available for TOFS.

TOF Adult Get-together, Thursday 15 September from 5.30 - 9pm, Worcestershire’s Hidden Garden at Bodenham Arboretum and Visitor Centre.

A true team TOFS effort at Newbury Racecourse!

With a supper subsidised by TOFS for the TOF adults and teenagers (partners/additional family members to pay for themselves, please). If you decide to make a day of it, you could visit the Arboretum and join us for supper.

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

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

TOFS children’s party, Saturday November 2.30-5.30pm, Brighton

12th

The fantastic entertainer Robbie the Magician will be in attendance. This is the ideal opportunity to meet other TOF families. Consultant Paediatric and Neonatal Surgeon Miss Anouk Van Der Avoirt and some of her team will be there to talk about TOF and answer questions.

2012 EVENTS Family Fun Afternoon, Saturday 28 April, Coram’s Fields Still some time away, but numbers are limited, so please register your interest today.

Live in Northern Ireland? We’re hoping to hold an event in Northern Ireland in early spring 2012. We have a limited number of members living in the Northern Ireland so we need you to register your interest now to make sure this happens.

TOFS Council of Management meetings Sunday 18 September St George’s Centre, Netherfield, Nottingham 9.30am - 12.30pm Sunday 20 November Teleconference, 10.30am - 12pm

Noddy, Paddington and Harry the Horse

Famous author, our very own Sophie Smallwood, was selling signed copies of her most recent Noddy book (proceeds to TOFS), with a little part-time help from Noddy himself. Sophie and Noddy have featured in stories and photos in at least one of the local newspapers since then. On the day, we made full use of the racecourse’s superb hospitality: some 22 TOF families attended, or about 87 people in all, making this a major event for TOFS. Most of our TOFS were younger children, as we might expect at this kind of event. However we also had a handful of TOF teenagers there and three adult TOFs.

A good time was had by all TOF mum Tracey Thomson said: “A big thank you for the race day, we had the best time”. The Poole family told us: “Thank you for an enjoyable day and we are pleased that we were able to 'shake the buckets' and help support TOFS”. The Thompsons said: “We all had a wonderful day and it was nice meeting up with some of the other families”. Andy Roud said: “We feel any little we can do to help a charity that was there for us at such a difficult period in our life is time well spent . Keep up the good work and we look forward to the next TOFS event." But this wasn’t just a great day out. TOFS was the official “Charity of the Day”. The racecourse had ensured that TOFS was highlighted in the racing programme for the day, and it also persuaded the Tote to invite Sophie to make a celebrity bet, with winnings to TOFS. Towards the end of the afternoon, TOFS members donned TOFS T-Shirts and, buckets in hand, collected donations from racegoers as they left the course.

A winning day for TOFS Between us we did very well indeed. Ian Thompson wins the honours as biggest collector - his bucket had some £289 in it! Others who did very well included the Poole and Dale-Ellis families with a joint £276, Veronica Radford £171, the Rolfe family £115, and Andy Roud and Christine Rafferty and family who collected £102. The total we raised, including sales of the Noddy book and the celebrity bet, was nearly £2500. A fantastic result, far Sophie Smallwood more than we had imagined could be possible. And there gees up the may be another big donation to come yet. fundraising with her Noddy book!

So a very successful day for TOFS, both financially and socially. Huge thanks are due to the team at the racecourse: Kate Walthew, Nicky Hares, and especially Head of Sales, Nicola Butler, who is a good friend of TOF mum Amy Fox.


Someone who inspires me

7

Smiley faces and rainbows

What a write-up! Here’s what eleven year old TOF Charlie Gough had to say about his mum, Alison Gough, in a writing exercise at school. (Read more about Charlie and his mum on the right) Everyone has a mother but mine is the best in the world because...my mom inspires me because of the effort she puts in every day to raise me up to be a good child who tries his hardest in everything he does. Some days she goes out and studies at college and every time she goes, she is one step closer to qualifying as a nurse. I love the way she never gives up on herself and just tries harder and works her way slowly and efficiently to the next level. She helps me push myself to the limits and to be the best I can. She also helps me with my homework and research I have to complete. Bless her soul, she always has a tea-towel hanging out of her pocket like a tail because she is always washing up every night after dinner. Me and my sister dry up the plates and pots and whatever is on the drying rack. I enjoy spending time on my own with her and I can remember one time we went out and she still had the tail on and we got out of the car (Jupiter jag as mom calls him!). I remember laughing my head off then told her so she put it back in the car! She (and my dad!) saved up for four years to take us all to Australia to see our auntie and uncle (Dee and Paul). Thanks mom and dad! Mom is hardworking like the athlete Usain Bolt! Not forgetting to mention that she adores books. Her favourite author is Jodi Picoult - she has the name of her favourite book tattooed on her foot. Some weeks she will go down to study at my Nan and Grandad’s house, because at home it is too noisy because of three children and a basset hound called Toby who is constantly nibbling at her college books! When me and my mom went in my Uncle Paul’s inflatable kayak in Australia, at swan river she knows I don’t like jellyfish, but there were lots in the water, but I was safe inside the kayak (at least that’s what I thought). She kept on scooping them up with the paddle and I don’t think I’d ever screamed that loud ever before in my entire life. I forced her to take me back to shore where I could enjoy a nice refreshing sodastream (by far the best drink in the world!). My mom can’t cook scrambled eggs because they always turn out like a sandcastle, but as I said she tries her best in everything. Her favourite saying is “There’s no such word as can’t.” To round things up, my mom is a hard working optimist who always tries her best in everything she does and secretly enjoys a glass of red wine and television on an evening!

Thank you to Charlie’s mum, who sent us a moving account of the first days of Charlie’s birth. We share an edited version here: One question ran through my mind...I stood lifeless, like a cold stone statue, paralysed by fear, frozen to the centre of the intensive care ward, unable to move. The question “Why wouldn’t they let me keep him, dad?”, the date Friday 14 May 1999, the time I do not recall. Charlie, my son, had been born four days earlier on a beautiful sunny Tuesday morning.”Tuesday’s child is full of grace,” the midwife sang out, as I arrived onto the labour ward. Yet there I stood four painful, life changing days later, in the ICU ward in the children’s hospital. Now, when I look at my eleven year old son I feel truly blessed for how much he has taught me about the ability to strive and achieve against all the odds. On the numerous occasions he has encountered surgery and medical procedures, bravery surfaces in him beyond what we would expect. He enriches my live daily and for that I will be eternally grateful. As a family we are always grateful to the professionals who have worked their magic on Charlie and continue to do so, from the highly skilled surgeons to the hospital porters and cleaners, they all play an important role in keeping Charlie well. As a family, we have grown up together. Charlie is now a great big brother to Julianna and Freddie and I thank God for them every day. My proudest achievement in my life is my family. We are strong, resilient and solid and as a family unit we will embark on the rest of Charlie’s journey together from predicted heart and spinal surgery to all the teenager protests, girlfriends, exams, and whatever else life throws at us. We’re still not on the home straight yet, but we have turned a few more corners, some harder to manoeuvre than others, but with Charlie in the driving seat it will be a guaranteed adventure. I look back at the time in the ITU ward eleven years ago with mixed emotions. I have always wondered how to describe the best and worst day of my life on one page, but my saviour at the hospital, Jean the nurse who wore the smiley faces and rainbow apron, summed it up perfectly at the time: “My wee lad is just grand”.


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tofs

at Baps

by Diane Stephens, TOFS office manager

This year, the British Association of Paediatric Surgeons hosted their annual congress in Belfast, Northern Ireland. We are very grateful to the organisers for allowing us to have a stand at the associated exhibition free of charge. We took advantage of cheap flights and budget accommodation to attend the exhibition to remind paediatric surgeons that our group exists and, hopefully, for them to tell their patients. This is the second consecutive year that TOFS have attended the BAPS Congress and we were made most welcome by the organiser (Dr Clare Rees of BAPS) and also by many of the BAPS representatives, including their President, our very own patron, Mr Gordon MacKinlay, and Mr David Drake and Hon Secretary/Treasurer, Mr Ian Sugarman. The paediatric surgeons as a group have more contact with TOFs than almost any other group of medical professionals, and the BAPS Congress offers us a valuable opportunity to meet so many of them under one roof. Most of our patrons are paediatric surgeons, and several of them come along to the stand to say hello. BAPS allowed us space in their exhibition hall where we had a panoramic view of Belfast and we attracted plenty of attention from the 300 surgeons who were attending from the UK and overseas. We reported last year on a paper which had been presented on a year-long study of current UK practice for treatment of newborn TOFS, and the authors of this paper are currently doing a one-year-old follow up study so we look forward to reporting on the results of this in a future edition of Chew. This year one of the studies focused on the developmental outcomes of TOF/OA children versus healthy control infants. This paper was presented by Karen Walker of The Children’s Hospital at Westmead, Sydney, Australia. Read more about the report on this page.

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

Early developmental outcome following surgery for Oesophageal Atresia By Dr Karen Walker, Dr Robert Halliday, Prof Nadia Badawi, Prof Andrew Holland. Grace Centre for Newborn Care, The Children’s Hospital at Westmead, Sydney, Australia Traditionally research has focused on improving survival and the long term medical issues surrounding infants with oesophageal atresia +/- tracheo-oesophageal fistula OA+/TOF). With the increasing survival of these infants, however, attention is now focusing on what happens next and in particular their development. Our group in Sydney, Australia aimed to determine the early developmental outcomes of infants with OA/TOF. We compared developmental outcome at one year of age of 32 infants with OA/TOF, comparing them with a group of 233 healthy control infants. The children were assessed using the developmental assessment, the Bayley Scales of Infant & Toddler Development (VersionIII).This assessment has five subscales; cognition, receptive and expressive language, gross and fine motor. We assessed the children on each of these scales. At one year of age, we found no difference in cognitive delay between the two groups with both groups having a low 3% of children delayed. In receptive language (understanding what is said), 25% of children with OA were delayed compared with 11% of the control infants and in expressive language (what the children said), 19% of children were delayed compared with 10% of control infants. With fine motor skills we found 13% of infants with OA were delayed compared with 9% of controls. The greatest delay we found was in gross motor skills, where 42% of infants were delayed compared with 18% of controls. Although there was increased delay in infants with OA/TOF, by far the majority of delay was mild and would likely be amenable to early intervention. Only one infant was found to have severe delay in gross motor, three having moderate delay in gross motor and one moderate delay in expressive language. Identifying delay at the earliest possibility enables intervention which may ultimately improve the outcome for the child and their families. With the results of this study, at the Children’s Hospital at Westmead in Sydney, we have now enrolled all infants with OA/TOF into our developmental follow-up clinics which will ensure that we provide the optimum care for these infants and their families.


Donations and fundraising For ongoing support we’d like to thank: 

Ian Smith, father to Matthew born with VACTERL - £703 raised to date by completing the Edinburgh Half Marathon



Aircraftsman Mr R M Rees-Prichett, (uncle to child born with TOF), and other students from the Royal Air Force School of Administration £72.50 raised by holding a charity pub quiz.



Form 8GB Dover Grammar School for Girls £76.13 raised by holding a teachers’ Karaoke event.



Rosie Harrington - £105 raised by organising a concert for her private pupils (one of her pupils is Tracey Waite born with TOF)



Astley Sports College & Community High School - £466.97 raised by holding a nonuniform day and staff donating to a charity Christmas bulletin.



The Tadley Tigers Rugby Football Club £643.50. The Tigers very generously gave TOFS half of the sum they raised at the recent Newbury races family fun day.

In loving memory of Graham Fox: Lodge Brothers Funerals Ltd - £325 in lieu of flowers at the funeral of the late Mr Graham Fox, Uncle to Gabriella Fox (born with VACTERL). Todd Speakman - £168.50 raised by holding a charity night in memory of Graham Fox, who was his close friend and mentor.

200 Club Winners: June July August

- Fiona Evans - Majella O’Mahony - Christine Churchward

9

A first for TOFS If there’s one thing more daunting than taking part in a marathon, it’s taking part in a marathon for the very first time! So we were very impressed to hear about Julie Haley’s recent success in the Edinburgh Marathon (pictured below). Julie braved the event after being inspired by Kay Leech, mum to Harriet, who was born with TOF/OA. We are delighted to say that this marathon effort has led to £165 being raised to date! Congratulations, Julie!


10

Adult TOFs Looking forward

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

pancreas and I was diagnosed with dumping syndrome at the age of 29. I’ve also been diagnosed with iron deficiency anaemia and fibromyalgia. I did have a lot of upset during my school years as I was so very small and felt different to others. I think a lot of my problems were psychological as I felt more comfortable being in hospital. I must say that I have some lovely memories of being in hospital. The nurses used to make me strawberry shakes from ice cream and would let me wear a nurse hat so I could pretend to be like them. I do feel as an adult that I was forgotten about once I reached 18 years and have often felt very angry when doctors have had no idea how to treat me. When I left school I worked voluntarily at a few special schools for children with cerebral palsy. I worked in Topshop, Littlewoods and in various clubs. My last job was working in a children’s home with older children with autism, aspergers and social problems which I loved. But after my last operation in 2002, it became too much and I had to leave. In 2002 I become pregnant and gave birth to a very healthy baby boy, Jamie, who is now eight. Having Jamie has been the best time ever! At the moment I’m having a lot of problems with breathing which are being investigated. My lungs are fine which I’m very surprised about with all the reflux

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

From the challenges of growing up with TOF/OA, to the joys of having her child, TOF adult Faye Barnes shares her story here: I was born in Plymouth 1975 with long gap TOF/OA. My first operation was done at two days old at Bristol Hospital. I was constantly in and out of hospital. Then in September 1976 I had a colon transplant. This then become very twisted and tangled and had to be done again at about the age of three. I had six big operations all to do with TOF/OA. I also suffered from an annular

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

Adult TOFs events

As you read this, we may be having our first-ever Adult get-together. We've planned a dedicated programme of events for adult TOFS and hope (subject to demand) to have a get-together on Thursday 15 September in Worcestershire. See page 6 for full details. Do you have a suggestion for a location for the next adult TOF get-together? Please let us know. Email info@tofs.org.uk Does anyone have a suggestion for a location for the next adult TOF get-together?

Blooming lovely. Faye with flowers!


11

tofs

tofs

of children born unable to swallow

of children born unable to swallow

support for families

support for families

No food for me I was born with a TOF

I have a TOF cough

From the Forum Have you visited the TOFS online community yet? You’ll find lots of parents’ tips on the issues that affect children with TOF/OA. A recent discussion centred around TOF/OA children going to parties after one parent shared her concerns about an upcoming event. Parents’ tips included: providing a list of ok food and drinks, providing a plate or a packed lunch and giving the host family a ‘what to do’ in the event of a stuck or a choke. Don’t forget, we provide badges stating “I have a TOF cough” or “No food for me – I have a TOF” which are very useful for parties and other events. To request your badges, please contact the TOFS Office.

Glossary Definitions of technical and medical terms mentioned in some of our articles and family updates

Annular pancreas: A condition in which an abnormal ring of pancreas surrounds the duodenum and frequently causes intestinal obstruction. Common symptoms are nausea and vomiting.

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

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

Gastrostomy: a way of taking in nutrition through a gastrostomy tube, a specially designed tube through which a baby or child can be fed. It is inserted through the skin directly into the stomach. Reflux or Gastro-Oesophageal Reflux (GOR): the acidic stomach contents pass back into the lower oesophagus. This can cause pain, a reluctance to eat and possible problems later in life.

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

Hello

Come rain or shine There was wet weather at the recent TOFS family day at Kirklees Light Railway, but it didn’t stop the fun. With around eight parents and 20 children coming along, it was a special day for all attending. Thank you to TOFS Trustees Duncan and Gill Jackson for organising the event and our best wishes go to their daughter Laura, who is currently recovering from major surgery.

to our new adminstrative assistant!

We are sad to say that Sam Hatfield has now moved on from his role here at TOFS, but we are pleased to welcome Debra Marks as our new Administrative Assistant. Debra will be supporting us by answering the phone, dealing with mail and keeping our databases accurate and up to date. Debra has three children, the youngest of whom is still at junior school. She enjoys helping out at his school cooking with the children once a week and going on school trips with them. When asked what made her decide to apply to work for TOFS, Debra explains: “I have known about TOFS for many years through a friend and when a job became available I decided to apply. The job itself is a rewarding position in being able to give support and reassurance to new parents of TOF children.”


support for families

to all our TOF-OA Children. Children six years and above are listed below, under sixes will receive a birthday card.

of children born unable to swallow

TOFS

September

Fax 0115 961 3097

Robert Youngs 10/09/1995 Carly Campbell 09/09/1996 Frazer Earl 13/09/1996 Kate Robbins 15/09/1996 Daniel Green 15/09/1996 Christopher Benjafield 04/09/1997 Samuel Riley 09/09/1997 Martin McDonnell 16/09/1997 Amy Lawton 26/09/1997 Bethany Gardner 09/09/1998 Jamie Gorman 25/09/1998 Phoebe Crabtree 01/09/1999 Daniel Turner 03/09/1999 Lewis Espley 04/09/1999 Megan Byrne 20/09/2000 Thomas Spencer 18/09/2001 Harry Knighton 19/09/2001 Richard Weedon 21/09/2002 Rebecca Crowe 26/09/2002 Joshua Earl 24/09/2003 Daniel Jeffreys 09/09/2004 Amy Fox 18/09/2004 Millie Dyson 08/09/2005 Daniel Hall 20/09/2005

Email office@tofs.org.uk

October

Website www.tofs.org.uk

Phillip Mainwaring 21/10/1996 Annie Mae Doherty 12/10/1997 Francis Harrison 22/10/1997 Louise Chase 18/10/1998 William Matthews-boote 22/10/1999 Caitlan McCoy 26/10/1999 Bernadette Quinlivan 05/10/2000 Corin Astles 09/10/2000 Bailey Stark 13/10/2000 Bethany Patton 19/10/2002 Elliot Anderson 20/10/2002 Dylan Baker 22/10/2003 Lucas Nixon 27/10/2003 Adam Howarth 31/10/2003 Louisa Shadlen 21/10/2004 Nadia Esseku-Otoo 01/10/2005 Bradley Rowlinson 01/10/2005 Skye Barker 11/10/2005 Daisy Stacey 16/10/2005 Isla Norrie Botto 23/10/2005 Isla Botto 23/10/2005 Jack Stothard 26/10/2005

Address TOFS St Georgeâ&#x20AC;&#x2122;s Centre 91 Victoria Road, Netherfield, Nottingham NG4 2NN Telephone 0115 961 3092

Registered charity number 327735 Company number 2202260 Medical Patrons Raymond Buick MB Bch FRCS James Dickson FRCS FRCSE FRCPCH John Duffy FRCS, MS, SF(CTh) Bruce Jaffray BMedBiol ChM FRCS(Glas) FRCS (Paed) Leela Kapila OBE FRCS Edward Kiely FRCS FRCS(1) FRCPCH Paul Losty MD FRCS (Paed) Gordon A MacKinlay FRCSEd FRCS Sean Marven FRCS (Paed) Agostino Pierro MD FRCS(Eng) FRCS(Ed) FAAP Charles Shaw-Smith BM BCh MRCP PhD Lewis Spitz PhD FRCS Non-Medical Patrons Richard Briers OBE CBE Dennis Foxon BA David Griffiths MA (Oxon) TOFS Presidents Gren and Christine Shepherd Council of Management Hon. Chair: Duncan Jackson Hon. Vice chair: John Pearce Hon. Treasurer: Sandra Hawkins Hon. Secretary: Graham Slater Sue Lewis-Jones Dennis Harvey Gill Jackson Sophie Smallwood Office personnel Office manager: Diane Stephens Office Administrator: Jayne Allitt Administrative assistant: Debra Marks The views expressed in Chew are not necessarily those of the editor or the Council of Management.

November Jaqueline Tilly 20/11/1995 Christopher Halsey 24/11/1995 Ciara Myton 09/11/1996 Liam Viljoen 08/11/1997 Eleanore Derham 18/11/1997 Max Williams 23/11/1997 Kate Remmington 26/11/1997 Jodie Kreft 28/11/1997 Miles Caven 19/11/1998 Adam C Williamson 17/11/1999 Maddison Tyrer 21/11/2000 Dylan Robinson 07/11/2001 Sinead Forde 08/11/2001 Antonia Maria McGrath 18/11/2001 Elliot Smith 20/11/2001 Saffron Corbett 27/11/2001 Louis Smith 28/11/2001 Morgan Miles 29/11/2001 Luke Warburton 03/11/2002 Milly Dimelow 07/11/2002 Nathan Ayling 11/11/2002 George Plapoutas 14/11/2002 Benjamin Sims 27/11/2002 Matthew Dolan 28/11/2002 Isobel Cattle 19/11/2003 Elizabeth Mole 21/11/2003 Benjamin Bailey 08/11/2004 Amy Ansbro 20/11/2004 Honey Chapman 21/11/2004 Megan Fletcher 04/11/2005 Freddie Hughes 18/11/2005

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

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

design: www.instaprint.co.uk / copywriting: www.greenlightcopywriting.co.uk

tofs

Happy Birthday


tofs chew Autumn 2011 low res