Feeding and swallowing disorders in children with clefts in orofacial region

Otroci z razcepi v orofacialnem področju imajo poleg težav z govorom tudi težave na področju hranjenja in požiranja. V prvem delu teoretičnih izhodišč magistrskega dela smo opisali anatomijo in embriološki razvoj ustne votline. Ker je za razumevanje težav s hranjenjem ključnega pomena poznavanje tipičnega razvoja hranjenja, smo opisali osnovne značilnosti faz hranjenja, organskih struktur, povezanih s hranjenjem, ter samo fiziologijo sesanja, požiranja, grizenja in žvečenja. Nato smo predstavili skupne značilnosti otrok, rojenih z razcepi v orofacialnem področju. Poleg pogostosti razcepa in morebitnega pojavljanja pridruženih motenj smo se osredotočili tudi na anatomske in funkcionalne posebnosti. V zadnjem, ključnem delu, smo opisali značilnosti hranjenja otrok z razcepi in predstavili definicijo težav, pojavnost in vzroke ter simptome težav s hranjenjem. Predstavili smo, kako je z obravnavo otrok z razcepi v orofacialnem področju v Sloveniji in drugje po svetu ter kakšne so diagnostične in terapevtske možnosti obravnave teh otrok. V empiričnem delu smo želeli ugotoviti pogostost in vrsto težav s hranjenjem otrok, starih od pet mesecev do šest let. V ta namen smo po pregledu literature izoblikovali anonimen vprašalnik za starše otrok z razcepi v orofacialnem področju, ga najprej pilotsko preizkusili na skupini 19 staršev otrok z razcepi v času obravnave pri strokovnjaku, nato pa vprašalnik poslali 93 staršem otrok, rojenih v obdobju od 1. 1. 2013 do 31. 12. 2016. Vprašalnik je tako skupaj izpolnilo 58 staršev otrok z razcepi v času kontrolnih pregledov v bolnici in v času logopedskih obravnav ali pa so vprašalnike vrnili po pošti. Rezultati so pokazali, da je imelo skoraj tri četrtine otrok, zajetih v raziskavi, težave z vzpostavitvijo hranjenja takoj po rojstvu, kasneje so se težave s hranjenjem zmanjšale, vendar so bile v četrtini primerov še vedno prisotne do operativnega zdravljenja ali celo dlje. Največ težav se je pojavljalo zaradi uhajanja hrane in pijače skozi nos. Pogosto je bilo tudi požiranje zraka pri hranjenju po steklenički in podaljšan čas hranjenja. Ugotovili smo, da vrsta razcepa pomembno vpliva na težave s hranjenjem, saj so imeli otroci z razcepom neba ob prisotnosti ali odsotnosti razcepa ustnice bistveno več težav s hranjenjem kot otroci samo z razcepom ustnice. Resnejše težave s hranjenjem so bile pomembno povezane z govornimi težavami. Pri otrocih z razcepi, ki so bili hranjeni po nazogastrični sondi, smo pogosteje zaznali tudi težave z začetnim pridobivanjem na teži ter grizenjem in žvečenjem. Večina staršev je za hranjenje uporabljala prilagojeno stekleničko in je bila z uporabo zadovoljna, čeprav je izbira stekleničk v Sloveniji skromna in je za alternativne možnosti treba pripomočke naročiti iz tujine. Ugotovili smo tudi, da so starši pogrešali podporo v zvezi s hranjenjem predvsem s strani medicinskih sester v porodnišnici in babic ter da je več kot polovica staršev mnenja, da so prejeli premalo informacij v zvezi s hranjenjem.Children with clefts do not only have problems with speech, but also with feeding and swallowing. In the first part of this master’s thesis theoretical description of anatomical structures and embryological development of oral cavity is given. Furthermore, in order to understand problems with feeding, knowledge about typical development of feeding and swallowing skills in infants and children is necessary. Therefore core features of swallowing phases, structural differences connected with feeding and physiology of sucking, chewing and swallowing are described. Afterwards common characteristics of children born with clefts in orofacial area are introduced. Besides prevalence and comorbidity of other problems, anatomical and functional consequences of clefts were also taken into account. In the last, key part, characteristics of feeding children with clefts are described along with definitions, main manifestations, causes and symptoms of feeding disorders in children with clefts. Treatment of children with clefts in Slovenia and worldwide, available diagnostics and therapeutic options are also introduced. The aim of the practical part was examination of prevalence and type of feeding disorders in children with clefts from ages of five months to six years. After a thorough literature overview and consultation with practitioners, anonymous questionnaire for parents was constructed. It was initially tested in a pilot study conducted during medical routine examinations and during speech therapy sessions. Ninety-three questionnaires were sent to parents of children born between 1st January 2013 and 31st December 2016. Nineteen questionnaires were returned during the pilot study and thirty-nine later on, giving the total number of fifty-eight study participants. Results show that almost three quarters of children that participated in the study had problems with feeding initiation right after birth. Even though that feeding disorder occurrence decreased afterwards, in quarter of cases problems remained until surgical treatment or are still present. The major problem before completion of surgical treatment was nasal regurgitation along with excessive air intake and prolonged feeding time. This survey also confirmed that the type of clef has an important impact on feeding problems. Children with isolated cleft lip had distinctly less feeding disorders compared with children with cleft palate with or without cleft lip. Severe feeding issues significantly correlated with speech problems. Furthermore, in children fed with nasogastric tube difficulties with weight gain and chewing seem to be more frequent. Majority of parents used special feeding bottles for children with clefts. They were generally satisfied with them, although there is a lack of feeding bottle selection in Slovenia, which could be overcome by ordering from abroad. Many parents expressed a lack of instructions and support in relation to feeding from maternity hospitals and more than a half of them claimed that they did not receive enough information about feeding from medical staff