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tofs chew Spring 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: Hugo Smith enjoying a drink. Read more about the efforts of Hugo and his family to raise money for TOFS on p2!

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Book for the 2011 TOFS Conference! A message from TOFS Patron, Richard Briers Oesophageal Atresia – a story with many gaps Growing up with TOF/OA and VACTERL – a mum’s story

...and much more!

Want to make a difference? Fundraise for TOFS. Please call us on 0115 961 3092


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From the editor... Welcome to your Spring 2011 issue of Chew! Happy New Year to you all. We hope that 2011 has started well for you. As you’ll see inside, there’s been plenty going on at TOFS! Read on for details of our next conference. It looks like our members and supporters have been busy too – take a look at all the fundraising efforts and family stories included inside.

WELCOME

A warm welcome to our new members! G G G

Chew is your newsletter so please keep on sending us your updates and photos (in digital format please!). We look forward to hearing from you soon!

Camilla Zajac, Chew Editor

Narinder and Joshua Frahm from London – Dennibir born 15/02/10 Catherine Curley and Darren Byrne from Dublin – Caitlin born 01/02/09

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Our apologies go to any members who didn’t receive their copy of the Winter Chew. Our distributor used an old list instead of the current one.

Claire and Simon Merrett from Leeds – Max born 29/08/10

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Lisa and Gareth Bolsover from Belper – Finn born 07/10/10 Helen and Shane Chenery from Australia – Mia born 27/03/10 Sara Ewin and Graeme Walters from London – Isabel born 25/10/10 Rachael and Jonathon Wilcock from Rochdale – Charlie born 22/04/10 Katie Thorn and Guy Collis from London – Freddie born 05/04/10 Mayyada Wazaify and Ehab Abu-Sultan from Jordan – Mohammad born 19/09/09

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Julie and Mark Francis from West Sussex - Marley born 13/08/09. Cristina Duranti and Bernhard Warner from Italy - Teodora born 04/09/09

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Lauren Ledsham and Jason Guy from Doncaster - Ollie born 14/11/10 Cassandra and Daniel Symms from Sheffield - Zander born 31/07/10

Chew cover story: Hugo Smith

A big hand for young Hugo Smith who, along with his mum and dad, recently raised £628 in a sponsored splash at his local swimming pool during TOFS Awareness Week! As well as being featured in his local newspaper, Hugo also recently made an appearance in three national newspapers, and has even been featured on local news programme 'Look North', where they told of Hugo's triumph of being able to move on to 'bite and dissolve' foods so he could finally start his journey on the path of eating and come off being tube fed through his gastrostomy.

A message from TOFS Patron, Richard Briers OBE CBE We are very grateful to the continued support of both our medical and non medical patrons. We were delighted to receive this message from Richard Briers:

"I am proud to be associated with TOFS and am delighted that this year sees the charity undertaking the task of highlighting their work to the general public and sharing their stories with those not already touched by TOF/OA. National awareness of this congenital, if rare condition, is vital to ensure TOFS continues to flourish with volunteers and donations. The support and information given by the community is a lifeline for many parents out there.

I’m delighted to pledge my continuing support for TOFS. I never cease to be amazed by these wonderful children and their families. Please continue to support TOFS. With very best wishes to you and your families.” Richard Briers OBE CBE


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Growing up with TOF/OA and VACTERL: a mum’s story By Christine Shepherd, TOFS President

Feeding I now know that, perhaps, these words were not strictly accurate because, at the age of six months, he got stuck on a piece of carrot in Stage 2 baby food. I had no idea what was happening initially. What I do remember is that milk started to spurt back. This happened intermittently at first, and I found that I was having to feed him more often to make up for this loss. By day three, he was completely blocked up and all feeds were coming back accompanied by bubbly mucus.

Tom, Christine and Gren Shepherd with Miss Leela Kapila at our 2010 Adult TOFs Conference!

It’s now over 25 years since Tom was born. He was born with TOF/OA and radial aplasia (See glossary on p11 for definitions) which were evident immediately after birth. The remaining anomalies were identified over the next few weeks. This was a very distressing period, as we felt that every time we saw a Consultant, more bad news would follow. Many people reading this will have experienced feelings similar to my own on hearing of the problems that their long-awaited baby was born with. Having had two healthy children, there was no reason to expect that my third would be born with a life-threatening condition. My first feelings following Tom’s birth were of disbelief, denial, anger and guilt. In the mid-80s there was very little information about TOF, and even less about VACTERL. It was a lonely place. I ordered reference books from Swiss’s Medical Library and in one large tome, found only one paragraph about VACTERL. I wrote to Prof Forfar and he advised that I looked into each of the anomalies as a separate condition, rather than consider VACTERL as a condition in itself.

This was the first of a number of episodes of Tom getting stuck on food – chicken, carrot, rice, sausage, pickled onion, the skin of a broad bean, banana, part of a Smarties pack, a damson stone, to quote but a few! In all, there have been around 28 occasions when we have had to go to hospital for the removal of food from the oesophagus. The first two years of Tom’s life were probably the worst in terms of operations, investigative procedures, physiotherapy, occupational therapy, development clinics and general anaesthesia. He had major surgery to repair the oesophagus, major surgery on his left kidney, two lengthy operations to reconstruct his hand and thumb, and nine bouts of “food removal” in this short space of time. All of this was accompanied by asthma, eczema, recurrent chest infections, poor hearing, weak ankles (necessitating Pedro boots), x-rays, barium swallows. It went on and on. People said that there would be an improvement by the age of five, but, believe me, I really could not see that happening. Tom was still eating first-stage baby food (we had to revert following the first episode), at the age of four, in addition to Quavers and other finely-processed foods – I became very inventive with cooking. Soup was my salvation, and still is today. It takes the edge off the initial hunger which means that Tom can slow down …

Three generations together! Tom with his dad, Gren, and his nephews, Oliver and Max.

I feel very guilty about my early thoughts in trying to protect myself from the inevitable. I really thought that Tom would not survive. When I finally mustered up the courage to go to the Neo Natal Unit the next morning, I found, to my surprise, that Tom looked perfectly normal and well – he did have a tube up his nose – but he was beautiful. All my feelings of wanting to abstract myself from this situation evaporated. Remaining positive I decided that I would do my very best to ensure that my children would have as near a “normal” childhood as possible, and that, just because Tom needed an operation to repair his oesophagus, it did not mean that I couldn’t do what comes naturally and that is to breastfeed. That was my decision, but I know that not everyone can, or may want to. But I felt that this was all I could do for him at that time. The repair to the TOF/OA took place on the morning after Tom’s birth. All went well, and Tom was discharged ten days later with the words “treat him normally”.

Christine and Tom at RAF Fairford where Tom was presented with his Wings by Prince Faisal of Jordan and Sir Glenn Torpy, Air Chief Marshall.


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Education Tom went to Playgroup and later to Nursery, but never, ever attended for a full week. At school, he was often weary by afternoon and the teachers allowed him to sleep on the bean bag in the latter part of the afternoon. He had to learn to write with his left hand which was very difficult as he is a natural right-hander. Because of the constant chest infections, itching from eczema, and swallowing difficulties, it has been difficult for Tom to enjoy a carefree and happy time as a toddler and as a child. He must have often felt very unwell, and we often spent entire days just sitting on the sofa and having a cuddle. I think that all of these illnesses and anxiety slowed down Tom’s educational development. But once he sets his mind on achieving a task, he sticks at it. He had four attempts at GCSE Maths and English and finally got Cs. However, he passed his driving test at the first attempt.

Progress, at last By the age of about eight, the episodes of “getting stuck” were lessening, the asthma and eczema alleviated, and Tom began to look healthier. At 11, he had started to put on a little weight and moved up from the 3rd centile. From the age of 12 to 22, although he still experienced food getting stuck, no further hospital admissions were necessary, so I was devastated when, at the age of 22 he was admitted twice within five weeks.

Normality Despite all of the illness and discomfort that Tom must have experienced, he rode a two-wheeler bike by the time he was five, he passed his driving test on the first occasion, and is currently on the last part of the test to obtain his private pilot’s licence.

The Future, then Tom’s Consultant, Miss Leela Kapila, once said to me that all things happen for a reason and that some good will come of it. She also said that it was thanks to supportive parents that children do get better. Miss Kapila’s insight was phenomenal. She relied less on text-book information, seeking instead the individual mother’s knowledge of her child. When a shattering event happens in your family, it can either draw you together, or pull you apart. We were lucky, but we did work at it. Our family changed: we joined TOFS. We have met wonderful, selfless people; we have learned so much. Tom has a very placid nature, is extremely tactful and has a good sense of humour. I am amazed at the bravery of all the children I have met.

I was sitting in the Out Patients Department of the City Hospital in Nottingham with Tom in December 1985, when I spotted a notice on the wall which said “Is your baby a TOF?” Having spent the previous six months trying to find information about TOF, feeding, why, etc etc, I was so relieved to find that there was someone else out there who had had a baby with a similar condition. Until then, I had met no-one. I almost came close to meeting another family. Apparently, another baby had been born with a similar condition a few weeks before Tom, but no information was forthcoming. This was before the internet! Also, I found that hospitals did not keep a record of this condition. It was not a notifiable condition, other than on the individual’s own notes which were manually held, and confidential, so the sharing of information was not possible. How excited I was to have found someone else with whom I could share my worries. That person was Sue Lewis-Jones, mother of Ben Dobbs. Sue lived just two miles away, shared the same GP and Health Visitor but, even though Sue had asked for her details to be passed to me, they were not given out. How frustrating to find that so few people, including GPs, knew nothing about this condition. Bearing in mind those feelings of isolation in the early days, I realise how important it is to meet those with whom you can share experiences. I feel very passionate about TOFS. Over the past 25 years, I have met and spoken to many families and have shared experiences and information with others. Sue put me in touch with Linda Morris, who had started TOFS as a Correspondence Group about three years before. Linda had invited me to take on the role of VACTERL Coordinator. Linda worked hard to formalise the support network and, in 1987, the Support Group took Charity Status and Gren and I were two of the people invited to be two of the first Trustees. In 1989 Nottingham became the home of TOFS. As our children were all small then, Sue and I spent many an evening in the office answering correspondence and telephone enquiries. Over the next 20 years all kinds of wonderful people came forward to be Trustees. The original aim is still at the heart of the Group – “To provide mutual support to parents and carers of children born unable to swallow”. But, many of these children have grown and so it was felt appropriate to develop TOFS still further to encompass TOF (with or without associated conditions) adults. It has been an honour to be part of TOFS and to have been there at the beginning; to have seen TOFS develop from a correspondence group (when a sheaf of handwritten letters was circulated from parent to parent by snailmail), to where it is now – an organisation which responds very promptly, through various media, to requests for information and assistance, staffed by dedicated people and Trustees who ask for nothing in return.

Onward Tom with big brother Ben (an RAF Tornado Pilot) after Tom won a Flying Scholarship organised by the Disabled Flying Association and funded by the RAF.

Even though Gren and I “retired” as Trustees, we will always be involved. We retired in the knowledge that the Trustees of TOFS with their extensive commitment, knowledge and business experience, will take the group forward. I can’t wait to see what the future brings.


A BBC documentary on TOF/OA – let’s make it happen

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The recordings were subsequently turned into two radio documentaries – one in Welsh, one in English and I gave the proceeds to Mac House. I’m crap at making cakes.

TOF mum Sioned Morys shares her experience and makes a call for TOF mums to take part in a documentary to raise awareness of the condition.

My name is Sioned Morys and I’m mum to Begw, a two and a half year old little TOF. She is my surprise child, I remember going to my GP demanding he gave something for nausea and tiredness, and the GP kindly suggesting the prospect that I might be pregnant. Half an hour later I was in a state of shock – and I’m a trained paramedic. My pregnancy was pretty uneventful. A specialist scan failed to see my unborn baby’s stomach, obstetricians wondered whether Begw had pyloric stenosis (See glossary on p11 for definition). I looked it up, it didn’t sound too serious. Then came the birth – three weeks early by emergency caesarean at the local hospital. What happened next is familiar to many TOF mothers. Begw was transferred to Alder Hey Childrens Hospital in Liverpool, a two-hour drive away. I had to stay behind because there was a chance I could haemorrhage after the caesarean. The next morning, I kind of discharged myself and got my father to drive me there – by that time Begw was in theatre for what turned out to be a 12-hour operation. We had a wonderful surgeon, Mr. Edwin Jesudasen. He repaired Begw’s TOF and stitched together two gaps in her small intestine. Oh and they found something called a Meckel’s Diverticulum (see glossary) which is a kind of second appendix, which he also took out….as well as the appendix. I’ve heard a lot of people describe what happened next as a bit of a blur – but I can remember it all very clearly. I can still see Begw, tubes everywhere, in an incubator on a respirator – her eyes closed by a couple of strips of tape. I remember her nurses, monitoring every shrill bleep her monitors made, willing her stats to stay up. I vividly remember her first poo! Now that was quite a milestone, because it meant that the surgery to her small intestine had held. And I remember asking my husband to bring me a microphone – so I could start an audio diary. You see, in my day-to-day life – I’m used, very used to following other people’s traumas. I’m a documentary film maker for the BBC and I knew that what I was experiencing was something that I should be recording – except this time, I wasn’t trying to persuade someone else to take part, this time, it was me. So that’s what I did. Every day, I’d talk to the microphone, telling it what had happened and how I was feeling.

Begw’s first year on this planet was pretty traumatic. She kept suffering from blue spells – she would, without warning stop breathing and turn blue. The first time it happened was when she was about three weeks old. We’d been home a week. I was breastfeeding, something made me look down and Begw – well she looked dead. Instead of immediately starting resuscitation, as I’d been taught by the hospital – I went to pot and ran downstairs yelling for my husband who very calmly took her and did the deed. Second time it happened, he turned to pot and I brought her back to life. By time number 20, we were old hands. Thank God – the last time it happened was about a year ago. Surgeons think the cartilage around her trachea has now strengthened sufficiently to stop it happening – although they’ve warned us to be on our guard. I’m afraid I turned her second year of life into a radio documentary too. It went out last Christmas.

So now to the reason for this article. I, along with a lot of mums on the TOFS community forum think we should be lobbying for our own peak time TV documentary – preferably on BBC1 at 10.30, which is when most people watch. There’s been a call out from the head of docs on BBC1 for what they term a single narrative observational documentary on strong and compelling subjects. Well, I kind of think we all fit the bill perfectly. The only thing is, I know how these programmes get commissioned. I know that the first thing they’re going to ask for is a mum who’s carrying a TOF baby. They’re going to want to film the beginning of the TOF story. I’m sorry if that sounds callous, but in order to make a good documentary, you need a sense of jeopardy – and our little ones certainly gave us that. Had I been pre-diagnosed, then quite possibly, it could have been me. As it was, everything happened quickly, too suddenly – there just wasn’t time to film. So I’m kind of hoping that through TOFS, or a kindly consultant – we might find our TOF mum. Once she’s found, then around that central narrative, that’s where we all fit in, all our varied stories. So if anybody is willing to take part, then please get in touch with Diane at the TOFS Office. Personally, I think any publicity around our children’s condition is good. I had no idea what a TOF was before Begw’s arrival, and I will be forever grateful to the TOFS community for all help proffered over the past few years. If we can get a few more people talking about it, a few more pennies into the coffers, a bit more research on how best to treat it and why it happens in the first place – well, I’m willing to give it a shot. Editor’s note: If you would like to take part or have any ideas, please contact Sioned via the TOFS office on 0115 961 3092.

TOF parents respond to One Born at Christmas Did you see the Channel 4 documentary One Born at Christmas which featured triplets, one of whom was born with TOF? Many TOF parents saw the programme and were very disappointed at the lack of background information about TOF/OA. Our thanks to Diane Maskrey and Joanne Ansbro amongst other TOF parents who contacted Channel 4 to express their disappointment. Our thanks also go to all our members who continue to raise awareness of TOF/OA in their local and national press. You can view the thread about the show on our forum, with details of the response from Channel 4 here: http://www.tofs.org.uk/index.php/forums/viewthread/758/


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Book NOW for the TOFS 2011 Conference We are now taking bookings for the TOFS 2011 Conference!

“Excellent! Speakers were very comprehensive and honest”

The 2011 Conference will be held on Saturday 15 October at the Holiday Inn, Birmingham M6, Jct 7. Once again, the task of organising our conference has been taken on by Sandra Hawkins, our very capable treasurer, along with her sub-committee. Sandra says:

“Very informative - even after our third conference it continues to help…”

“We are looking forward once again to a really informative conference. Key speakers will offer parents and carers the chance to learn first hand from specialists about surgical and medical advances in TOF/OA and VACTERL. As well as the conference sessions there will be workshops and many opportunities for parents to get to know each other and share experiences. We intend to close the conference with a forum as we did last year where parents will have the opportunity to put their questions to a medical panel.” Please write to the office or email NOW if there’s a particular topic you’d like to see covered, or if there are any pertinent questions you have about TOF/OA and VACTERL. Here are some comments from our previous conferences: “the speakers were wonderful, the talks inspiring…” “...it has been invaluable. So much great information and knowledge. We feel much more confident and equipped to deal with the road ahead”

How to book your place Please note that bookings cannot be made electronically, and will only be accepted on the official booking form which will soon be available from our office. Please phone 0115 961 3092 or email info@tofs.org.uk . The cost (subsidised by TOFS) is only £20 per person, including lunch and refreshments. Early booking is advisable. Please note that the conference sessions are not suitable for children. There is a crèche available (up to 10 years), but places are limited.


Adult TOFs

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Gastrostomy tube re-siting - can you help? Are you a parent with an adolescent TOF who has had to have their gastrostomy tube re-sited due to leakage? We have one parent of an adolescent who has been advised that, although they haven't discovered why the tube is leaking, it would be best to re-site it. The risk of leakage into the peritoneal cavity means they are considering their best course of action. Can you help?

Lack of smell or taste - can you help? TOF adolescent, Frazer (14) has no sense of smell or taste and it seems he never has. His parents did mention it to Frazer’s GP who wasn't very interested and said that the only known treatment for smell was a very uncomfortable scrape. Frazer has no polyps and there seems to be no other cause. His mum and dad wonder whether the issue is TOF-related and would be interested to hear if there were many other cases and any solutions. Editor’s note: Can you share your experience with these families? Please let us know by phoning the TOFS Office on 0115 961 3092 or emailing us at: info@tofs.org.uk

A leaflet for adult TOFs We were delighted with the response we received to our first conference for adult TOFS last year. In response to the feedback we have received and to our own research, we are planning to draft a GP’s leaflet especially for adult TOFs. If you have any ideas or tips for inclusion in the leaflet, please let us know by calling 0115 961 3092 or by emailing us at: info@tofs.org.uk

Are you an adult TOF? Take part in our survey If you’re an adult TOF or someone with an interest in support for adult TOFs, why not let us know what you think by taking part in our online survey? This is your chance to help shape the services we offer to adults with TOF/OA in the future. Your responses will be kept completely confidential. All you need to do to take part is follow this online link: http://www.tofs.org.uk/index.php/news/article/areyou-an-adult-tof1/

Want to see a medical specialist? If you’re an adult TOF and you would like to see a medical specialist, thoracic specialist Mr Duffy is happy to see adult TOFs. You will need to request a referral from your GP.

Oesophageal Atresia: a history with many gaps By Sophie Smallwood, TOFS Trustee On 22 October 1670, almost exactly 300 years before I was born, Dr William Durston attended a miraculous birth. The mother, Grace Batter’d, already had five children and had gone into labour with her sixth baby. Or so she, her husband (a shoemaker) and the midwife thought. That night Grace gave birth to conjoined twin girls. They were joined from the chest down to the stomach. Neither lived beyond the birth but, with their father’s reluctant agreement, an autopsy was performed. William Durston’s observations were very detailed; he noted the four kidneys, the single liver and the enlarged heart. He also described the oesophagus of each child. He found that ‘the oesophagus from the right head descended no lower than a little above half an inch off the midriff, and there it ended.’ This is the first recorded description of Oesophageal Atresia (OA). OA in twins is actually relatively common. Professor Spitz, who coincidentally pioneered surgery to divide conjoined twins and to treat children born with Tracheo Oesophageal Fistula (TOF) and/or OA, commented that ‘OA is two or three times more common in twins’. (Spitz L. 2007). TOF is the condition where the baby is born with an opening between their oesophagus and their trachea. It generally occurs with OA but can, less commonly, occur on its own. Twenty six years after Grace gave birth to the twins another case of OA was reported. Dr Thomas Gibson noted in 1696 that he was called to see a newborn baby. This child seemed desperate to feed, but all the milk taken spilled back out through the mouth and nose. Sadly nothing could be done. A post mortem showed that the baby’s oesophagus did not reach its stomach. Although OA and TOF are found in about 1 in 3500 births it was 1840 before another case was described. A Dr Thomas Hill was called to a birth where the baby could not seem to swallow. According to Spitz, Hill suggested that rubbing the baby’s bottom may help it to swallow and then discovered that there was no sign of


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Licensed use of jejeunostomy tubes - can you help?

We recently heard from TOF dad, John Payne, who is looking for some advice on which feeding devices are licensed for use with a jejeunostomy. He explains more below:

an anus. This defect is an ‘Imperforate Anus’ and is one of the defects found in VACTERL (Please see glossary on p11). Thomas Hill did operate on the baby’s anus, but it was unsuccessful (Brantberg A. 2007). Another century passed before surgery on OA and TOF was successful. In between several attempts were made. Charles Steele tried in 1889. In 1913 Richter suggested a plan to cut the fistula between the oesophagus and trachea and sew the two ends of the oesophagus together. Does that sound familiar? Richter didn’t try the surgery because there was no way to keep the baby breathing during the operation. This approach is now used whenever possible. Lanman tried several times (about 30) to operate, going through the chest wall to get to the oesophagus and trachea. Sadly none of the babies survived, However Lanman’s experience and careful reporting certainly contributed to the success of future surgeons. In 1941 Cameron Haight of Ann Arbor in Michigan applied Lanman’s techniques on a baby girl. She lived and is now a grandmother. Just six years later, in 1947, Richard Harrington Franklin made the first two successful repairs of OA and TOF in Britain. One of these babies was Bridget. She is now a grandmother and a member of TOFs. Editor’s note: If you are an adult born with TOF/OA we’d love to hear about your experiences of growing up and living with the condition to feature in future issues of Chew. Please email us at: info@tofs.org.uk References: 

Annals of the Royal College of Surgeons (1992). Volume 74, Pages 72-73. Brantberg A. (2007) Fetal and perinatal implications of anomalies in the gastrointestinal tract and the abdominal wall. ntnu.diva-portal.org/smash/get/diva2:122373/FULLTEXT01 – Durston W. (1670) A Narrative of a Monstrous Birth in Plymouth Octob. 22. 1670; Together with the Anatomical Observations, Taken thereupon by William Durston Doctor in Physick, and Communicated to Dr. Tim. Clerk. Philosophical Transactions. http://rstl.royalsocietypublishing.org Spitz L. (2007) Oesophageal Atresia Orphanet Journal of Rare Diseases. http://www.ojrd.com/content/2/1/24

Our son Charles has CHARGE Syndrome. One of the many conditions he was born with was OA with upper pouch fistula and TOF. About 19 years ago, Charles had a gastric transposition (see glossary on p11 for definitions). Professor Lewis Spitz was his consultant at GOSH back in 1992 - a wonderful man to whom we owe so much. For the best part of 14 years, we fed Charles via an 8 french 92 cm Corflo NG tube, inserted through his stoma straight into his jejunum. This worked very well indeed. Charles started to receive some much welcomed respite by the local authority. However, we were told that due to the fact that the Corflo NG tube was not licensed to be used the way that we were using it, the nursing staff at the hospice would not be allowed to replace or change the Corflo NG tube, and if it did come out while Charles was in their care, they would have to call us and we would have to travel to the hospice and replace it ourselves. Needless to say this did happen on a regular basis. It was suggested to us that a way around this problem was for Charles to be fitted with a Mic-Key button, which the staff at the hospice were allowed to replace/change as needed. We spoke to our son’s surgeon and he agreed to fit Charles with a Mic-Key button. Charles had a Rue-en-y jejunostomy procedure. For the first two years everything went quite smoothly; then at the beginning of 2009 Charles started to pull his Mic-Key button out. The surgeon did a scope and discovered an ulcer just inside the stoma. After treatment for the pain and some time, the surgeon scoped him again and said the ulcer had healed. What did not stop was Charles pulling his Mic-Key button out. Just recently we asked the community dietician to get us a supply of Corflo 12 French 92cm NG tubes, and although it was a backwards step we tried them with Charles and have had a good result. They seem to be more comfortable for him. Although he still pulls them out, he leaves them in longer than the Mic-Key button. We believe the root cause of Charles pulling his tube/button out is the excessive amount of bile he produces when he is on his feed. We think this is causing irritation in the stoma tract as well as causing bile reflux episodes that have resulted in Charles aspirating and developing pneumonia on quite a few occasions. We are at our wits end as to what to try next. We feel that we are getting a better result with the Corflo NG tubes, but it puts us back into the same position that we were in before he had the Mic-Key fitted. The respite nurses are not allowed to replace/change it because the jejunum is not a licensed route for the Corflo NG. Lately when he has gone into adult respite with an Corflo NG in the stoma they have replaced it with a Mic-Key button when the Corflo NG has come out, which I might add is less comfortable for Charles. If it is possible could you please point me in the right direction as to how I can find out which feeding devices are licensed for use with a jejunostomy? I am not sure whether or not a Mic-Key Button is licensed for use in a jejunal stoma. Editor’s note: Do you have any advice for John? If so, please let him know via the TOFS office by calling us on 0115 961 3092 or emailing us at: info@tofs.org.uk


Family Update

Sara and Barry Dolan write from St Helen's in Merseyside: Matthew was born in November 2002 with wide gap OA and had a colonic interposition when he was three months old. For many years he was fed via a Mic-key button (see glossary on p11 for definitions). When he was about six years old, he started to drink some of his milk feed and eat small amounts of food. In September 2010, after six months of not using it, the Doctors at Alder Hey were so pleased with his progress that they recommended his Mic-key button be removed. Matthew now eats three small meals a day and drinks his special milk. Removing his Mic-key button turned out not to be as simple as it should have been. Matthew's site did not fully heal and he had to have the hole closed surgically. This was done in December and Matthew is now doing well. It has not been easy and we wondered if we would ever get there. When you are going through it and you hear other people say there is light at the end of the tunnel, you find it hard to imagine, but you do get there! Matthew gradually started to show interest and we took it at his speed, firstly getting him to drink his milk and then eating food. If anybody wants to talk we are happy to be contacted. Thanks for being there for the last eight years. Editor’s note: Thank you for offering support to other TOF parents, Sara and Barry! You can contact Sara and Barry via the TOFS office by phoning us on 0115 961 3092 or by emailing: info@tofs.org.uk

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Iris and Keith Benjafield write

from Bexleyheath in Kent:

Christopher (now aged 13) eats extremely well and doesn’t have any swallowing problems. He is a ‘happy chappy’ who enjoys school and Scouts. There is a light at the end of the tunnel.

Support for people with anorectal malformations Are you interested in joining a UK-based support group for people with anorectal malformations? London paediatric surgery trainee Stewart Cleeve MBChB FRCS (Paed Surg) is currently undertaking research into anorectal malformations. With only a Facebook discussion group available currently, is this something you would be interested in joining? You can get in touch with Mr Cleeve either via the TOFS office or by emailing him direct at: stewart.cleeve@bartsandthelondon.nhs.uk

Financial support for children and families The Boparan Charitable Trust exists to enrich the lives of children who are disadvantaged through poverty, disability and life limiting illness. They are based in the West Midlands and provide financial support to children under 18 in the UK. See their website for applications, guidelines and list of items they will fund by visiting: www.theboparancharitabletrust.com Don’t forget Contact a Family provides advice and support for families with disabled children. They have an online Cash Counts service to help families with a disabled child to claim the benefits they are entitled to. See www.cafamily.org.uk/cashcounts


Fundraising 10

  

Donations and fundraising

Julie Molyneux - £50 raised through Webb Ivory Sales Emma Johnson’s (mum to Jack) aunt - £25 Chris Welch (pictured right) - £1000 raised by taking part in the Run to the Beat Half Marathon in London

For ongoing support and for donations raised specially for TOFS Awareness Week, we’d like to thank:     

Isabel (age three and born with TOF/OA) and Dylan (age five) Winspear - £35 raised by asking members of the family to guess how many conkers they had collected Lee, Sarah and Rebecca Harris - £300 raised by holding a coffee afternoon Chris Cooper (grandparent) - £100 raised by telling her friends about TOFS Matthew and Kelly Dignum - £800 raised by competing in the Virgin London Marathon Jo Okley - £155 raised in a bake off Here’s Oli Okley enjoying some cake on his third birthday. His mum, Jo recently raised £155 for TOFS with a special cake bake off held at her workplace. It’s all thanks to the cake-mad staff at the Telford Probation Office who asked lots of questions about TOF/OA and ate plenty of the cakes that were lovingly home made by Jo (including Dorset Apple Cake, Flapjacks, Ginger Cake, Brownies, Coffee Cake, Fruit Cake, Lemon Drizzle Cake and Bakewell Tart!). Not surprisingly, the staff have asked Jo to do another event!

       

Cora, Ben and Lexie Pollock - £800 raised by doing a sponsored swim in support of their sister Eden who was born with TOF/OA Suzanne Thorne - £72.63 raised by holding a pampered chef party Michael and Tracy Robinson - £20 Cynthia Wadman (godmother to Louise Mills who is mum to Elena born with VACTERL) - £50 Judith Bland - £20 donation in lieu of sending Christmas cards Joy Howell, grandmother of adult TOF Colin Ryan - £20 Felicity Anderton (grandmother to Joel Anderton) - £100 donated in lieu of sending Christmas cards Claire Carey and family (pictured below) - £764 raised for TOFS Awareness Week in an online auction in which the family auctioned everything from Puddleduck swimming lessons to shopping vouchers.

 

Group and corporate donations

 Arkleston Primary School - £100 raised at a movie afternoon (one of the girls in the school has a sister with TOF)  Barbara McKenna and her colleagues in the Forensic Investigations Department at Cheshire Police Headquarters £115 raised by taking part in a dress down day. Barbara also baked cakes and biscuits for the Northwich Police Station, raising a further £135  Staff and pupils at Crosshill Special School, Blackburn - £130 raised at a Christmas raffle, pictured right (with the star prize - a signed photo of Edwin van der Sar, kindly donated by Manchester United!)           

         

Richard Curtis - £268.40 raised by completing the Swanage Half Marathon. The Townsend Family - £50 donated on behalf of Freya Rowley who was born with TOF and has just celebrated her 1st birthday Chris and John Layne (grandparents of Ben Bailey) - £100 Mrs S Gilley - £1000 (Mrs Gilley’s grandson, James, who was born in 1983 with TOF/OA is now a Chef) Julie Cronshaw, Director of Highgate Ballet School - £200 to match last year’s donation Renate Nickolay-Lilley - £30 collected from work colleagues, in lieu of sending Christmas cards John Stacey (grandfather of Daisy Stacey) - £45 in celebration of his 60th birthday TOF mum Julie Lewis - £270 raised in a sponsored 24 hour fast S A Kneath - £45 donation to mark the 60th birthday and retirement of John Stacey Kim Smith - £200 raised at her son Hugo’s big sponsored splash (pictured right)

Leela Kapila - £250 raised at a lecture Thank you to members of the TOFS Council of Management who kindly donated some or all of their expenses back to TOFS.

      

The Barnton & Frodsham Angling Club - £100 LeeAnn Fashions Ltd - £152 raised by holding a sale for unwanted gifts. (Thank you also to Jane Hawkins for putting our name forward!) Fairfield Nursery Cheshire Care Ltd - £149 The Sandgate Ladies Phoenix Group in Kent - £20 raised at a talk given by David Paton, grandfather to TOF child, Lewis Carney Customers at Lyn & Stuart Grayson’s family bakery - £145 Hook C.E. Primary School - £71 donated in lieu of sending Christmas cards St Mary’s Nursery in Blackburn - £310.10 raised with a pyjama party and raffle. (Harriet Leech who was born with TOF attends the nursery) Bishop Carpenter School - £101.72 held at a charity big breakfast Participants in the Folkestone Lions Club Boxing Day Dip 2010 - £50 Identity and Passport Service, Durham - £150 (TOFS was nominated by Jayne Unsworth, mum to Frances born with TOF/OA) Royal Bam Group Netherlands - £836.74 donated as part of their BAM 140 Anniversary (nominated by employee Roger WalshAtkins, BAM Nuttall, father of TOF, Philip). The Howard Lodge of Brotherly Love - £250 at a charity dinner Wolverton and Stony Stratford Rotary - £200 raised at a gold day charity event Robinson Lodge no. 2046 - £155 raised at an evening function The Newcastle West Probus Club - £50 News International Credit Union Ltd - £967.32 (nominated by Robert Tyrer) Rachel Simpson, her partner, and the Royal Marines - £100 raised during the Corps Birthday Dinner (Rachel’s son Joe has TOF) Elizabeth Palmer - £91 raised by her daughter and friends (her son Charlie has TOF).

200 Club Winners

Congratulations to our latest winners: November – Sarah Tester December – Clifford Chipperfield January – Mark Burgess


Glossary Definitions of technical and medical terms mentioned in some of our articles and family updates ASD (Atrial Septal Defect): a heart problem in which there is a hole between the top chambers. Apnoea: suspension of the breathing.

AVSD (Atrioventricular Septal Defect):a congenital heart defect in which there is a deficiency of the atrioventricular septum of the heart. CHARGE Syndrome: an acronym describing a group of anomalies which are sometimes associated with TOF/OA. Dilatation: a procedure undertaken to widen a narrowing of the oesophagus (stricture). Gastric transposition (or “pull up”): an operation in which the stomach is used to replace the oesophagus. This involves freeing up the stomach of all its attachments in the abdomen and re-routing it through the inside of the chest into the neck where it is joined to the upper oesophagus (gullet). 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. Gastrostomy: a surgical opening through the abdomen into the stomach in which a feeding device is inserted through the opening. Hickman line: an intravenous catheter used to administer medications and other substances. Hyperspadia: a condition where the urethral opening is on the side of the penis, which can cause problems with urination. Imperforate anus: this refers to the absence of a normal anal opening, one of the anomalies that can occur in babies diagnosed with VACTERL Association. Mic-key button: a feeding tube which provides nutrition directly into the stomach via a tube through the stomach wall. Mitral regurgitation: a disorder in which blood leaks back through the mitral valve in the heart as the valve does not close properly. Meckel’s Diverticulum: an out pouching from the intestine. Rue-en-y jejunostomy procedure: A jejunostomy tube is a specially designed tube through which your baby/child can be fed. It is inserted through the skin, and then runs either directly into the jejunum (a part of the intestines which lies a little way after the stomach) or into the stomach and then on into the jejunum. Nissen Fundoplication: this procedure is commonly used to reduce Gastro-Oesophageal 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. Oesophagostomy: the artificial opening of the oesophagus onto the surface of the neck. PDA (Persistent Ductus Arteriosus): a heart defect in which the connection between the aorta and the lung artery, which normally closes shortly after birth, continues. Port-A-Cath: a small medical appliance inserted beneath the skin to administer medications and fluids. Pyloric stenosis: Pyloric stenosis causes a blockage of food at the stomach outlet. The main symptom is persistent vomiting. Radial aplasia: abnormality of the development of the radius, a bone in the forearm; a condition affecting some VACTERL children. Tricuspid regurgitation: a disorder in which the heart's tricuspid valve does not close properly, causing blood to leak into the right upper heart chamber when the right lower heart chamber contracts. VACTERL Association: the term ‘VACTERL’ describes a group of anomalies which can occur together in newborn babies. It is an acronym for: Vertebral (spinal) defects, Anorectal atresia (failure of the anus and lower end of the gut to form), Cardiac (heart) defects, Tracheaoesophageal fistula with or without Esophageal atresia (American spelling of oesophageal’), Renal (kidney) anomalies and Limb defects. VSD (Ventricular Septal Defect): a congenital heart defect in which there is an opening in the ventricular septum, or dividing wall between the two lower chambers of the heart.

Happy Birthday

11

to all our TOF-OA children six years and under (under sixes will receive a card).

March Mia Bradbury 13/03/2002 Liz Buur 11/03/2005 James Flynn 24/03/2004

Jordanne

France

07/03/1996

Olympios

Gougoulias 06/03/2002 Gemma Harper 29/03/1995 Lewie Herbert 05/03/2004 March Hollingbery 08/03/1997 Amy Howes 23/03/1997 Lauren Hulligan 07/03/2001 Pippa Hynes 08/03/1997 Georgia Jenkin 23/03/1998 Megan Kilby 13/03/1999 Megan Knox 07/03/1999 Ryan Lowe 09/03/2004 Justin M Albrechtsen 24/03/2005 David Malcolm 11/03/1999 Holly Martin 15/03/2003 Isabelle Maude 31/03/2005 Jack Mullens 12/03/1997 Lauren Naylor 21/03/2003 Grace Nolan 06/03/2005 James Rogers 26/03/2003 Daniel Sandford 28/03/2000 Ben Smith 03/03/2004 Grace Walsh 06/03/2003 Lukas Weber 09/03/2003

April Jack Berry 09/04/1996 Ewan Brocklesby 19/04/2005 Phoebe Cannetti 10/04/2002 Cormac Carolan 11/04/2004 Alyssa Ciambelli 26/04/1995 Joe Francis Cooper 20/04/2001 Andrew Day 12/04/1999 Robert Doward 17/04/1998 Robbie Edwards 20/04/2005 Ellis Elson 12/04/2005 Megan Evans 18/04/1996

David

Fenton-Smith

26/04/1999

Thomas

Flowers 23/04/2005 Zijian Guo 10/04/2003 Daniel Heath 19/04/1996 Gemma Hewitt 01/04/2005 Miriam Holland 03/04/2001 Samuel Holleron 30/04/2001 Emma Morrison 26/04/2005 Samuel Mullins 18/04/2000 Bradley Newman 11/04/2000 Peter Riis 13/04/2005 Lucy Robson 26/04/1997 Lily Rolfe 08/04/2004 Charles Shotton 25/04/1997 Thomas Smith 19/04/1996 Phoebe Smith 29/04/1997 James Soper 25/04/1998 Max Swarbrick 24/04/2003 Kimberley Taylor 25/04/2001 Laura Thompson 18/04/1998 Caspian Tyrer 18/04/1995 Edie Witton 05/04/2005

May Luke

Burgess

13/05/2004

Leonardo

Capodacqua

06/05/2004 Jordan Clifford 24/05/1996 Robert Corbett 19/05/2003 Cyrus Dezfulli 19/05/2004 Matthew Flynn 19/05/1996 Charlie Gough 11/05/1999 Adam Gowler 05/05/2005 Stephen-Thomas Gray 17/05/1997 Anna Rose Greco 05/05/1998 Matilda Green 10/05/2000 Jac Griffiths 03/05/2003 Steffen Hansen 26/05/1995 Connor Hardy 16/05/2005 Eilidh Latimer 15/05/1997 Connor Middlehurst 15/05/1996 Victoria Mince 01/05/1998 Tudor MorganHuggett 23/05/1995 Nicole Morley 31/05/1999 Priya Pandey 17/05/2005 Katy Rainforth 11/05/2004 Isobel Shorrock 15/05/2002 Sophie Smith 10/05/1995 Thomas Smith 07/05/2004 Kristopher Spender 26/05/1995 Joe Turner 30/05/2005 Michael Webster 25/05/1995 Charlie White 10/05/1998


12

Introducing our new member of staff! We are pleased to introduce our new administrative assistant, Sam Hatfield, who started working with us in January. Sam’s role is to help our day to day activities run smoothly, with a mixture of general admin work and taking phone calls from members requesting help or information. Sam is enjoying learning about how TOFS helps families. He says: “After finishing University last June, I volunteered with a few local charities to gain some work experience and to make use of my free time and this sparked my interest in working in the voluntary sector. I hadn’t heard of TOFS before I applied for the role, but was immediately interested in the work they do.” Sam tells us that when he’s not working, he pursues his passion for music, especially blues. He also plays guitar and bass with friends and describes himself as an ‘ardent jogger’. Great to meet you, Sam!

Can you share your experiences? Are there any other TOF children out there who haven't had a successful repair or oesophageal substitution procedure? Michelle King, mum to little Oliver, tells us how he is almost four and still with no sign of a successful repair. She explains: “Oliver was born with Down syndrome, and AVSD and PDA and a long gap oesophageal atresia (see glossary on p11 for definitions.) He has also had strokes. We have had numerous failed attempts to repair the oesophageal atresia. For this he now has an oesophagostomy, gastrostomy (with chronic leakage causing a lot of pain) and jejunostomy. The AVSD and PDA repair has left Oliver with a residual VSD, mitral and tricuspid regurgitation, Pulmonary Hyptertension for which he is oxygen dependent. Oliver also has numerous other problems including apnoeas, a floppy trachea, and is deaf. Oliver also has a Port-A-Cath in situ (after exhausting three Hickmans) and a history that includes multiple episodes of organ failure, c-diff, colitis, septis, endocarditis and cardiac arrest. They have had three attempts to try and repair the oesophagus (including the Foker procedure) numerous attempts to stop the leakage on the gastrostomy site, three Hickmans, Port-A-Cath, AVSD repair, PDA repair and numerous other smaller operations.”

Editor’s note: Has your child, like Oliver, not yet had a successful repair or oesophageal substitution procedure? Please let us know by phoning the TOFS Office on 0115 961 3092 or emailing us at: info@tofs.org.uk

Pictured: Catherine and her son Aaron enjoy Dublin’s Christmas market.

Meet our volunteer in the Republic of Ireland We’re delighted to introduce Catherine Downey, who recently became a TOFS volunteer in the Republic of Ireland. Catherine is helping to develop our network and to build awareness of TOFS in her part of the world. Here she shares a little of her story: Aaron was born in June 2005 weighing 4lbs 5ozs. He had TOF/OA, ASD, undescended testes and severe hyperspadia (please see glossary on page 11 for definitions). I barely remember the haze that followed the first week taking in all the medical information and the fear of what the future might hold. A tip I got from another mum was to write a diary to your child and also to record anything you might need again for the doctors. I plan to give it to Aaron on his 18th birthday. In Ireland the system is different to the UK where there was no liaison nurse to coordinate everything. Those first few years were traumatic. I was constantly explaining Aaron’s condition to doctors – at one stage I wanted to have a t-shirt printed with all the information! We have been extremely lucky as Aaron hasn’t needed any dilatations or had any severe stucks. Aaron’s speech was behind, but once he started in a crèche he came on within weeks. Aaron started school last September and is doing really well. We welcomed another boy in 2009, Matthew, who thankfully had no problems. The main reason for writing is to link up with any other parents of TOF kids in the Republic of Ireland as I know to have a friendly ear or someone to share this with or have a cry does help. Those first few months are the most daunting and if anyone wants to get in touch with me, I would be more than happy to help. If you’re based in the republic of Ireland and would like to get in touch with Catherine, please contact the TOFS Office on 0115 961 3092 send an email to: info@tofs.org.uk


Thanks a million!

13 bumper months, with over £11000 raised by your events. Thanks so much for this excellent result!

By John Pearce, TOFS Vice Chair

Diane and the COM put a lot of work into applying for grants during the past year. The Freemasons were good enough to give TOFS £2000, and we obtained a £6835 grant from the lottery, so that we could pay for our first adult TOFs conference and the associated publicity. TOFS does not receive any money from national or local government. The net result of all of this is that TOFS’ total income for the year Dec 09-Nov 10 was nearly £85,000, which was about £20,000 above our original budget. Some of this “extra” money was received only because we had plans to spend it, of course….. but TOFS will show a good surplus for the year. The final accounts are still being collated by our accountants and will be available at the Annual General Meeting. This excellent result has meant that we can plan to spend significantly more in 2010-11. Indeed we plan to spend about £87,000 in the year Dec 2010- Nov 2011, so using up much of the surplus from 09-10. We are making Chew a little larger, and starting to revamp some of our leaflets. Our website is going to get a much-needed refresh in 2011. We are planning several events for TOF families this year, with dates set so far for Children’s parties in Yorkshire, London, and a day at Newbury Racecourse. And we hope to organise at least a couple of Adult TOF meet-ups. TOFS usually spends a lot of money on its biennial child-focused TOF conference: the next one will be this October, in the West Midlands. To help us organise the additional activities, and to tackle an administrative backlog, we have recruited Samuel as our third part-time staff member – he is on a short-term contract.

Well, not quite a million, but…almost a year ago we appealed for more funds to be raised. Your response has been excellent, and the COM is very grateful. A year ago, we were quite worried by the slow downward trend in the income for TOFS. In order to keep doing useful things for TOF people, the COM wanted to stop this decline. We are delighted that money-raising really picked up since spring last year, as you can see from the chart. This shows the total income of TOFS for 12 months to a given month, so the April 10 point, for instance shows our income for the period May 2009 to April 10 inclusive. You can see why the COM was concerned early last year!

Get sponsored for TOFS!

There were several notable parts to the big increase in 2010. Between you, the funds raised by TOFS members and friends really rocketed. Several of you raised big money in the London Marathon and other sponsored events early last year – Jamie Mills raised over £6800 alone, a truly fantastic effort. There were also very many small money-raising events during October’s awareness week. This and November were

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TOFS' total income for past 12 months

Last year saw many of you take part in sponsored events, raising a lot of money for TOFS in the process. We are very grateful for this: the extra money is allowing us to increase the tempo of activities this year. If you are thinking about - or better still planning to - run a marathon or half marathon, or take part in one of those long bike rides, or do something similar, please think about raising money for TOFS. Please think "safety first" however. If you do decide to raise money for TOFS, that's great, but we don't want anyone putting their health or safety at risk. Physically demanding events should only be undertaken after following a recommended training schedule. The organisers of the sponsored events almost always have sensible suggestions.

We can let you have sponsorship forms, TOFS T shirts and other items. We can also accept donations via websites such as Justgiving and our preferred site Charity giving, which allows you to automatically split donations between TOFS and other charities.


14 of KEKS, herself the mother of a TOF child, Caren Kunst who spoke about developments in Holland, in particular web- enabled healthcare systems and Karen Gawne who spoke about the results of analysis of around 900 OA patients in Australia, the oldest going back 60 years.

EAT: an update By Graham Slater, TOFS Secretary We have reported before about the aim of establishing an international support organisation to be known as EAT. Here is a more comprehensive article on how and why this organisation is being formed. In September 2009, TOFS was invited, along with several other European TOF/OA support groups, to attend and to present at the first ever (and, arguably, long overdue) international medical conference on OA, which was held in May 2010. This conference was organised by the Jeanne de Flandre Children’s Hospital in Lille. The conference emerged from the ‘French National Plan for Rare Diseases’ and the EU’s desire for more trans-national co-operation and information exchange in medical matters added to the momentum for such a conference.

There followed a brief Q&A session during which there was some (though limited) concern expressed by one or two consultants that our activities encroached on the domain of the medical profession. However this induced Prof. Spitz, coincidentally one of our medical patrons, and who had been an earlier presenter at the conference, to offer some strong words of support for all the support groups present. Responses from individual consultants during the entire conference, and particularly after our presentation, led to the clear conclusion that our attendance there had been a success. Subsequent to the Lille conference, EAT has decided to carry out a European survey into the experiences and ongoing condition of TOFs aged 16 years and older. It is hoped that this will give us a better understanding of the degree to which, and in which ways, TOFs continue to have difficulties and conversely do not have difficulties in their lives. We are currently seeking support from specific medical professionals across Europe in this project. I am convinced that international collaboration will be a beneficial complement to our respective national activities, not least by providing a single strong voice in our dialogue with the medical profession, by sharing good practice and by appropriate joint projects. The author would like to acknowledge that much of the above was based on an article written by Thomas Kroneis of KEKS Austria and published in the December 2010 edition of ‘Kruemelchen’, a regular KEKS publication similar to CHEW.

For the European support groups such as TOFS, this invitation was a ‘must’. Not only because the agenda covered topics including the latest surgical techniques, development of OA in the embryo, possible environmental factors, pre-natal diagnosis to after-care. In this latter category we, the support groups, were given the opportunity to present our role in the support and after-care of TOF/OA patients and their families. This was a tremendous opportunity for us to present our very existence, our activities and our capabilities to an international audience of medical professionals. Representatives of AFAO (France), KEKS (Germany, Austria, Switzerland) VOKS (Holland) together with ourselves had originally begun to plan for this event at the last TOFS conference in Newcastle in October 2009. We agreed there to form an international association with the advantage of being able to have one voice with an international medical community. Our joint presentation at Lille demonstrated that our association was more than symbolic and we were pleased to be joined also by OARA, a support group from Australia whose primary focus is on supporting research into OA. Whilst each contributing support group prepared its part of our joint presentation in advance, the final touches were put together in a number of meetings whilst we were in Lille. Our presentation was opened by me giving a summary of who we are and what we do. This was followed by a section on the German after–care by Dr Jutta Trompelt

Members of the new EAT group at the first TOFS Adult Conference in 2010

The TOF Child in progress

Our publication The TOF Child has received a consistently positive response since we first launched it. Your feedback tells us that the book has proved to be a very useful resource over the years. We're indebted to Charles Shaw-Smith and Vicki Martin for their invaluable work on the new version of the book. Progress is continuing on the book right now and we’ll keep you updated with more news as soon as we get it.


15

EACH – supporting the rights of children in hospital Regular visitors to the TOFS website may have seen the featured link to EACH – European Association for Children in Hospital. This link will take you to the EACH Charter, which is a list of the rights of all children before, during or after a stay in hospital. The Charter can be read in full on the EACH website at: www.each-for-sick-children.org/, but the following forms the basis of its principles:

1

Children shall be admitted to hospital only if the care they require cannot be equally well provided at home or on a day basis.

2

Children in hospital shall have the right to have their parents or parent substitute with them at all times.

3.1 Accommodation should be offered to all parents and they should be helped and encouraged to stay.

3.2 Parents should not need to incur additional costs or 3.3 In order to share in the care of their child, parents should

TOFS Events Coram's Fields Get Together, Saturday 30 April Bring your own picnic and join us for this free fun day. Entertainments run from 2- 5.30pm and include Magical Mayhem (from last year’s kids’ party), balloon modelling, magic, and circus skills! If you’ve already booked, we’ll email directions to you in due course.

TOFS AGM, Sunday 8 May, St George’s Centre, Netherfield, from 1pm All members are invited to attend. Please join us for sandwiches from 1pm

suffer loss of income.

be kept informed about ward routine and their active participation encouraged.

4.1 Children and parents shall have the right to be informed in a manner appropriate to age and understanding.

4.2 Steps should be taken to mitigate physical and emotional stress.

5.1 Children and parents have the right to informed

participation in all decisions involving their health care.

5.2 Every child shall be protected from unnecessary medical treatment and investigation.

6.1 Children shall be cared for together with children who have the same developmental needs and shall not be admitted to adult wards.

6.2 There should be no age restrictions for visitors to children 7

8

9

in hospital.

Children shall have full opportunity for play, recreation and education suited to their age and condition and shall be in an environment designed, furnished, staffed and equipped to meet their needs. Children shall be cared for by staff whose training and skills enable them to respond to the physical, emotional and developmental needs of children and families.

Continuity of care should be ensured by the team caring for children.

10 Children shall be treated with tact and understanding and their privacy shall be respected at all times.

UK members of EACH include Action for Sick Children in England and Action for Sick Children in Scotland.

Are your contact details up to date?

Do we have the correct contact details for you? If you’re reading this, we should have an up to date postal address for you! However we’d like to make sure we have your current email addresses and telephone numbers as well. If you’ve used or are a regular user of our community forum on our website, you may be contacted soon by Trustee Dennis Harvey as we’re trying to validate the information we hold on members. Please respond to this email or send us a quick email to the office with your current contact details, especially your telephone numbers and email addresses.

TOFS Family Day in West Yorkshire, Kirklees Light Railway, Yorkshire’s Great Little Steam Train, Sunday 29 May 2011. (Please note the change of date for this event.) Call us now to book your place.

Newbury Racecourse Family Fun Day, Sunday 31 July, Newbury Racecourse Our Newbury Racecourse event is looking to be bigger and better than ever this year. Sunday 31 July is Newbury's annual Family Fun event - a day of horseracing with a family-friendly theme. We're just waiting for confirmation from Newbury, but we hope to be able to get a large number of free tickets for TOFS member families to come along and enjoy the fun - and also do a spot of fundraising there. Please get in touch with the office NOW if you're interested in coming along, by emailing: info@tofs.org.uk or calling: 0115 961 3092.

2011 TOFS Conference, Saturday 15 October, Holiday Inn, Birmingham M6, Jct 7 Book your place now! (Creche with limited places available)

TOFS Council of Management meetings: Sunday 8 May, St George’s Centre, Netherfield, Nottingham, 10.30am - AGM 1pm Sunday 10 July, Teleconference, 10.30am - 12pm Sunday 18 September, St George’s Centre, Netherfield, Nottingham, 10.30am - 2.30pm Sunday 20 November, Teleconference, 10.30am - 12pm


support for families

of children born unable to swallow

TOFS Address TOFS St George’s Centre 91 Victoria Road, Netherfield, Nottingham NG4 2NN Telephone 0115 961 3092 Fax 0115 961 3097 Email office@tofs.org.uk Website www.tofs.org.uk Registered charity number 327735 Company number 2202260 Medical Patrons Raymond Buick MB Bch FRCS James Dickson FRCS FRCSE FRCPCH Bruce Jaffray BMedBiol ChM FRCS (Glas) FRCS (Paed) Leela Kapila OBE FRCS 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 Edward Kiely FRCS FRCS(1) FRCPCH 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 Administrative assistant: Jayne Allitt Administrative assistant: Sam Hatfield The views expressed in Chew are not necessarily those of the editor or the Council of Management.

The Council of Management held its first meeting of 2011 on Sunday 9 January. Our busy agenda included discussions on the following: 

  

Our move into a bigger office within St George’s Centre to enable us to better accommodate our new member of staff (Sam Hatfield) and members of the Council of Management on their periodic visits to the office for sub-committee meetings and to discuss matters with our staff. We discussed the finances as at the end of the recently ended financial year (30 November 2010) and approved the budget for 2010-11. In order to effectively organise our 2011 TOFS conference (to be held on Saturday 15 October) we established our sub-committee under the leadership of our Treasurer, Sandra Hawkins. We agreed to attend appropriate medical events and conferences in 2011, notably the RCPCH annual conference in April and the BAPS conference in July. We also agreed to support the newly established international association of TOF support groups whose chairman-designate is TOFS Trustee, Graham Slater (see article on page 14).

Equipment funding and support for disabled children Could your child be eligible for a Newlife Foundation Equipment Grant? The Newlife Foundation has made equipment grants worth over £5 million, ranging from £50 to £17,000 to buy equipment including mobility, care equipment, comfort and therapy equipment and much more. The charity funds equipment relevant for children up to and including the age of 18 who have a significant disability and who are permanent residents in the UK. The charity does not means test and can make same day equipment grants in emergencies. For more information, call Newlife on 0800 902 0095 or visit www.newlifecharity.co.uk

We’ve moved

(but our address is exactly the same) That’s right. We have moved in order to accommodate our growing team. But because we’re still at the St George’s Centre in Netherfield, Nottingham, our postal address and phone number are exactly the same as before!

From the TOFS forum Here are some recent topics of discussion on our online forum:  Potty training progress  The first cream cheese sandwich  Snack time at nursery  Scoliosis  Disability Living Allowance – eligibility for different rates

Join the conversation by visiting www.tofs.org.uk/index.php/forums/

TOFS office staffed: Monday to Wednesday: 8.30am - 3.00pm Thursday and Friday: 8.30am - 2.00pm

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

TOFS Council of Management Report


tofs chew Spring 2011