This information has beenwritten for the parents ofTOF children by TOFS(Tracheo-OesophagealFistula Support) – helpingchildren born unable toswallow.

If you have any feedbackon this leaflet, please useour leaflets feedbackform which is availablefrom either the TOFSoffice our web site.

TOFS relies on moneyfrom membership fees,voluntary donations andother sources ofcharitable income tofund its activities.

Web sitewww.tofs.org.ukAddressTOFS,St George’s Centre,91 Victoria Road,Netherfield,Nottingham NG4 2NNTelephone0115 961 3092Fax0115 961 3097Emailinfo@tofs.org.uk

TOFS does not offerspecific medical adviceto parents. We workonly in a supportive role,offering emotional andpractical support to meetthe needs of parents andproviding a source ofinformation whichcomplements that givenby the specialist hospital.

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Jejunostomy tubesContent provided by Elaine Sexton and Chris Holden –members of the Feeding Liaison Team at Birmingham Children’s Hospital.

What is a jejunostomy?A jejunostomy tube is a specially designedtube through which your baby/child canbe fed. It is inserted through the skin, andthen runs either directly into the jejunum(a part of the intestines which lies a littleway after the stomach) or into thestomach and then on into the jejunum.

Your child/baby will need a generalanaesthetic for this procedure. The doctorwill explain the operation to you, but it isimportant that you ask questions if youfeel unsure about any aspect of theprocedure, so that you fully understandwhat is involved.

The tube stays in place until it needsreplacing or the child is eating enoughthat a jejunostomy is no longer required.

What is a stoma ?The stoma is the surgical opening in theabdominal wall through which thejejunostomy tube is inserted. The stomais red and the size of a very small sultana.

Why does my child needa jejunostomy?If your doctor feels it is advisable for yourchild to be tube fed in this way, he/shewill discuss this in detail with you.

However, there are two main reasons whya TOF child may need a jejunostomy:

a) babies or children with severe gastro-oesophageal reflux (GOR) or poorgastric motility may benefit fromjejunal feeding.

b) babies or children who haveundergone gastric transpositionsurgery (‘stomach pull-up’) cannothave a gastrostomy tube inserted (afeeding tube which runs into thestomach), so under thesecircumstances a jejunostomy tube isthe only option.

Feeds can also be administered directlyinto the jejunum via a tube which passesthrough the nostrils, down the throat,through the stomach and duodenum andinto the jejunum.

What sort of tube willmy child have?There are a variety of jejunostomy tubesavailable. The most appropriate tube will bechosen by the doctor after talking with you.

All tubes are all made from a soft materialcalled silicone. Nursing staff will showyou the ones available and how they arecared for. If you think it may be helpful tosee the device or meet someone who hasexperience of a jejunostomy, ask themedical staff.

How do I care for my child’sjejunostomy?The principles of jejunostomy care are the samewhatever kind of tube is used. Because the tubebypasses the anti-infection mechanisms present inthe stomach, it is essential that a good standard ofhygiene is maintained.

Before handling the jejunostomy site, whether forcleaning, feeding or anything else, wash your handswith soap and water.

Wear disposable gloves and ensure that the worksurfaces where you are going to be when you handlethe tube are clean and dry.

The skin around the site must be kept clean and dry;warm saline should be used for cleaning followed bycareful drying with gauze swabs.

If the area becomes reddened (inflamed), seekmedical advice. A bacterial swab may be taken tocheck for infection; if present, the child may need acourse of antibiotics.

The site must be examined for leakage after feeds. Ifthis occurs, medical advice should be sought. Thesurrounding area can be protected using a barriercream and/or protective dressing; this is particularlyimportant if the material leaking from the site is agreeny yellow colour, indicating that bile is present inthe discharge.

How do I feed my child?Feeds to be given through a jejunostomy tube arespecial formulations which will initially be providedby the dietician and then prescribed by your GP.

A computerised pump must be used to deliver thefeed slowly over many hours; nursing staff will teachyou how to use the pump. If given too quickly, it maycause diarrhoea, abdominal discomfort and/ordistension.

The tube must be flushed with sterile water (orboiled water which has been allowed to cool) on aregular basis:

a) after feedsb) before, between and after any prescribed

medication which is given through the tube (onlygive medicines which you have specifically beentold are safe to use through a jejunostomy)

c) at least twice a day to prevent the tube blocking.How should I position my childwhen giving a feed?Try and make him/her as comfortable as possible.The best feeding position is sitting or ‘propped up’because this helps the stomach to empty morequickly.

Is there anything I can do while mychild is having a feed?It is important that your child has the chance to bewith the family at mealtimes; mealtimes are socialoccasions and your child should be included. Youshould encourage your child to touch and taste foodjust like other children.

Children who have been fed by jejunostomy for along time may develop to be poor feeders, so it’simportant to make their tube feeding experience asclose as possible to a ‘normal’ mealtime so that thetransition to oral feeds is as stress-free as possible:

• Let your child have something in the mouth totaste while they are being jejunostomy fed. Thiswill enable them to associate the sight, taste andsmell of food with the feeling of hunger beingsatisfied.

• Encourage your child to play with foods.• Talk to your child at mealtimes.• Offer plenty of praise and encouragement when

small amounts of food are put in the mouth.• Between meals, when your child is in the mood,

encourage mouth games using the mouth andtongue e.g. blowing and kissing. This will gethim/her used to having things in and around themouth and will help them later with normalfeeding. If he/she does not seem able to movefood around the mouth and swallow properly,inform the doctor.

IF YOU’RE NOT ALREADYA MEMBER OF TOFS,WHY NOT JOIN US?Information availablefrom either TOFS officeor the TOFS web site. TOFS

What safety issues needto be considered?It is important that the tube is correctlysituated in the jejunum: the position canbe checked by:

a) ensuring that the length of the tubefrom the exit site to the cap remainsthe same

b) ensuring that the tube flushes easilywith water

c) testing any fluid which flows back thetube for its acidity (pH) – it should bealkaline

d) ensuring that the tape is well stuckdown and looped correctly.

Cleanliness is essential: the equipmentused to give feeds (the ‘giving set’) shouldbe changed daily and the measuresdescribed previously (under the section oncaring for the jejunostomy) should befollowed whenever the tube is handled.

Make sure that the end of the tube isnever inadvertantly tucked into the child’snappy/pants.

PROBLEM SOLVINGIf the tube becomes stiff to flush orentirely blocked – which is usually due toa build up of fat on the inside – flush itwith sterile warm water and consultmedical staff.

If the tube is pulled out, it is importantthat it is replaced immediately if you havepreviously been shown what to do.Alternatively, take the child immediatelyto hospital ... if the stoma is not keptopen it may start to close within only afew hours.

Related leaflets fromTOFS which you mightlike to read:1 Nasogastric tubes2 Jejunostomy tubes3 Gastro-oesophageal

reflux4 Gastric transposition

These are all availablefrom the TOFS web site(www.tofs.org.uk)or from TOFS office.

TOFS also publishes abook, ‘The TOF Child,’which is suitable forboth parents andmedical professionals.Details are availablefrom TOFS.

What about bathing orswimming with a tube?Some types of jejunostomy tube are moreflexible than others in usage, but it ispossible to allow these activities for mostchildren with a few preliminaryprecautions. Ask nursing staff for advice.

Lastly…Having a child with a jejunostomy willinvolve you some extra work and willinevitably be quite stressful at first, untilyou get used to the routines involved.

Try not to let feeding dominate your life –accept what help you are offered fromfriends and family, and remember that thehospital staff are there to answer queriesand offer support when you need it.