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C ystic fibrosis (CF) is a genetic illnesswhich renders the body unable tocontrol the movement of salt andwater through its cells. It causesthe body to produce thick andsticky secretions that particularly affect thelungs and digestive tract. The symptoms ofCF often include recurrent chest infections, atroublesome cough, digestive problems, andpoor weight gain (although these symptomsare not unique to CF).

CF affects a number of organs, includingthe lungs, digestive system, pancreas andliver. It is one of the most common inherited

Health concerns:

Cystic Children with cystic fibrosis requirespecial care and attention, but witha little effort any setting can learn tomeet their needs, says charityCystic Fibrosis Trust...diseases in the UK and currently affectsaround 9,300 people. As people are livinglonger, the numbers of people with CF areincreasing. CF shortens life expectancy –current median predicted survival is 41 years,but many people live longer than this. Aroundone in 25 of the population carries the CFfaulty gene and when two people with thatgene disorder meet and have a child there is a one in four chance that their baby willhave CF.

CF is an inherited condition and otherchildren cannot ‘catch’ it. Babies are screenedthrough the Newborn Screening programme

for CF and the condition is usually diagnosedwithin three months of birth through the heelprick test.

Characteristics Because CF affects so many areas of thebody it may show up in different ways. Some babies are born with bowel problemsor meconium ileus (a blocked bowel at birth),which can be a sign of CF and requiresurgent surgical care. As a child with CF getsolder they often have a characteristic coughand may have clubbing of their fingers andtoes. Otherwise, they will look just like anyother child.

Treatment Parents will have a daily physiotherapy regimeat home, which takes up to an hour in themorning and again at night. It takes the formof percussion (patting the body) or blowingtechniques to clear mucus from the child’sairways. A child with CF may take othermedications, including nebulizers, inhalersand tablets to aid digestion.

In the case of children attending nursery,parents and CF Nurses will work withpractitioners to ensure that any medicationsthat need to be given during the day areexplained and demonstrated. One medicinethat most children with CF need to be givenduring meal times is Creon, which aids thedigestion of food. For young children thisusually comes in powder form, which can besprinkled on meals. Children with CF oftenneed higher calorie food to maintain theirweight too, so may need to be offereddifferent food or milk at meal times.

If a child has been unwell they may need tohave some extra physiotherapy during theirday at nursery. It is important for the child tohave somewhere private to do this, as it willoften lead to the bringing up of mucus, whichchildren may feel self conscious about. There

Fibrosis

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For the last two years, the NationalSchools Partnership and Dettol haverun Planet Health – an EYFS andnursery programme that offers freeresources to schools and early yearssettings across the UK, designed toteach children aged 3–7 aboutpersonal hygiene in an engagingand memorable way. Almost 6,000settings have already signed up toreceive theirs, and all you have to doto claim yours is register online attinyurl.com/tnplanethealth. You’llfind more information at planet-health-schools.co.uk

Free Planet Health resources!

The Cystic Fibrosis Trust is the UK’sonly national charity offering freeadvice on aspects of CF. The charityprovides help, advice, guidance andwelfare support for families affectedby cystic fibrosis. The CF Trust alsoworks closely with specialist cysticfibrosis centres and health workersto ensure they are providing the bestpossible care for patients with CF.Additionally, the charity contributesfunding for medical research intocystic fibrosis to help improve andlengthen the lives of people with CF.

Parents and the public can callthe Trust’s helpline, which is freefrom a BT landline, from 9am until4.30pm, Monday to Friday foradvice and guidance – call 0300 3731000, or visit cftrust.org.uk

What help is available?

may also be a need for extra nebulizedantibiotics during the day at particular times.

Child developmentIt is usual for children to grow as normalproviding treatments are going well. There isno mental impairment, but children mayappear smaller in stature, though this is by nomeans always the case. Some children withCF may have to leave nursery for a couple ofweeks in order to take up antibiotictreatments in hospital; this can be disruptiveto the child’s routine, so a close workingrelationship with parents is a must.

Things to think about■ Early years settings must be careful that achild with CF does not mix with any otherchild with the illness, as this may cause crossinfection problems. Parents will normallycheck with the nursery to find out if there isanother child with CF attending. ■ Beware of spreading infection. All nurserieswill have an infection policy, but where thereare children with particularly productivecoughs at nursery, children with CF can bemore susceptible to those bugs, as theirlungs are more likely to be affected byrespiratory germs. Good hygiene is veryimportant; washing hands after sneezing orwiping noses can make all the difference, aswell as regular cleaning of door handles,tables and materials.■ Physical exercise is beneficial for childrenwith CF so they should participate in all theactivities, games and running around thatother children do. ■ When a child has been recovering from aninfection, the illness can result in loss ofenergy, which should be taken intoconsideration; they may need more nap orquiet time at these points, but be guided bythe parents.■ There are very few adjustments needed tocare for a child with CF – all that’s required isa bit of extra time and a spare room toadminister any medical treatments.

■ Children with CF have had treatment fortheir condition almost from birth; for them thisis natural and they do not think of themselvesas in any way different from other children.

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