Children with CL/P are facing a lot of challenges with their families and caregivers. The child with cleft path through a long critical treatment journey start at when feeding begin. Child – mother attachment process also affected especially if the disfigurement in case of cleft lip and palate with several extent is apparent. A well- prepared team of required specialties can provide an appropriate standard of care to increase parents’ satisfaction and address the needs of the child along with their subsequent treatment process.
Causes of cleft palate:
No specific cause has been proved until now, but several recent studies stated that it is a complex process of environmental and genetic factors 1 . Otherwise, researchers identified several risk factors that could contribute to the incidence of cleft 2. The risk factors involve presence of genes and environmental teratogens during the first trimester of pregnancy such as alcohol consumption, folate antagonist, tobacco exposure and retinotic acid3.
Furthermore, non – syndromic cleft (not associated with other congenital anomalies) thought to have a higher recurrence rate than syndromic clefts. Researchers in their investigations about genomic rearrangements, whole genomic association and candidate gene studies concluded that FGF8, MSX1, FGFR1 and BMP4 associated with the presence of CL/P4.
Challenges associated with cleft palate:
Problems or difficulties faced by the child represent a challenge for the family, caregiver, health team, the child in the first place, or all of them in the same time. Vast majority of parents in recent studies investigating cleft parents’ satisfaction indicate their crucial need for instructions and detailed information about how to feed their children start from the detection time and two fifths of them express their dissatisfaction because they were not informed about the feeding challenge prior to birth 5.
The most prominent challenges that concern parents are feeding and consequent delay of growth of the child which also in turn affect the timing and readiness of the child to surgical procedure6. Many studies about growth parameters of cleft children were published but their results were not in the same line. Some studies confirm delay of growth of children with cleft specially in the first two years of life until repair completed then the child grow in a similar pattern as normal children 7. Other studies identify that children with cleft grow in the same pattern like normal children if case of non-syndromic cleft. Moreover, some researchers mentioned that there is a relation between intra-uterine growth retardation and type of cleft8.
The recent studies focused on the factors influencing feeding of infants with cleft aiming to face this challenge and conclude that infants with cleft have inappropriate seal and swallowing coordination 9. In spite of this fact the investigators reject the idea that those children cannot feed and grow properly like normal children 13 10. Most of the studies that confirm delay of growth of children with cleft are from developing countries which lack the presence of multidisciplinary team work it may be found as a concept but not applied in real situations15 11.
Surgical management of children with cleft palate:
Platoplasty (cleft palate repair) aiming to restore the palatal anatomy into more anatomic state to overcome feeding and speech challenges 16 12. Additional surgical procedure may be needed after that to treat problems of hypernasality as Z-plasty which performed for lengthens the soft palate and decrease incidence of speech problem. Also, operation of pharyngeal flap could be needed to connect pharynx to the soft palate 17 13. Although the fact that surgical procedure outcome not 100 % guaranteed, the studies concluded that at least 80% of the patients’ speech improved18 14.
Nursing Management of Children with CP/Parent Education:
Nursing management is continues for cleft children and can be divided according to the stages the child go through in their treatment journey 15. Role of the nurse started at the time of detection by counselling. Reassurance by provide the parents with enough information about the defect and challenges that will face them after delivery 16.
Also plan prepared by the nurse should consider the uniqueness of each child regarding the type of cleft and extent of the defect 17. Therefore the nurse should be highly qualified and well trained to demonstrate feeding procedure or refer the child to needed specialties 18. Also the knowledge of the nurse must meet the universal standard and continuously updated whether related to the treatment process or devices used to help the child for feeding 19.
Nurse also coordinates with the other specialties in the team work 20. Second stage begins after birth monitoring the mother or caregiver while providing feeding for the child with cleft and the response of the child 21. Follow up of growth parameters to ensure the proper development of the child and confirm the method of feeding and technique used 22.
Preoperative period is very critical for caring of the child. The child needs to be on a suitable body weight and proper level of hemoglobin and other operation required state to avoid delay of repair procedure such as to be free from infection 23. Preparation for post- operative period starts from this time to prepare and supply the parents with proper information and skills to deal with the child 24.
Timing is very important to overcome challenges and avoid conflict in care 25 . The next stage after repair is about ensuring proper healing process and detects any complication or possible defects after repair 26. Aim of care for all the team member are to ensure that the children with cleft will address their best potentials at the end of intervention process and to be well involved as a normal member in their community 27.
A multidisciplinary team is required to deal with the surgical, speech, dental, developmental, and psychosocial challenges of a child with cleft lip and palate. Nursing care provided for the child with CP offer support for all the family through the treatment journey.