Feeding with Cleft Lip and Cleft Palate
According to the American Speech-Language-Hearing Association (ASHA), a cleft lip is a congenital split in the upper lip on one or both sides of the center and a cleft palate is a congenital split in the room of the mouth. When identifying a cleft, the classifications are divided into two groups, isolated cleft palate and cleft lip without a cleft palate (Mossey, Little, Munger, Dixon & Shaw, 2009). The cleft lip usually includes unilateral or bilateral. When comparing clefts and their severity a complete cleft will extend through the lip and the nasal sill, unlike an incomplete cleft lip which extends through the orbicularis oris and skin, but there is intact lip tissue that remains present (Crockett & Goudy, 2014). Cleft classification can be confirmed after an infant’s birth. As expected the quality of life for the child and the parents can be severe especially for parents or caregivers who are unsuspected of a cleft (Crockett & Goudy, 2014). Crockett & Goudy (2014) also indicate that emotional and psychological needs must be recognized and addressed for all those involved with the patient. There can also be difference in occurrence between males and females. When comparing frequency of cleft palate, it is more common to see cleft lip with or without a cleft palate in males, and an isolated cleft is more typical in females (Mossey, Little, Munger, Dixon & Shaw, 2009).
Clefts of the lip and/or palate affect approximately 1 in 700 live births (Crockett & Goudy, 2014). Cleft lip with or without a cleft palate is the second most common birth defect in the United States, numbers saying it affect one in every 940 births and resulting in 4.437 cases each year (Parker et al, 2010). “International data suggest a variation in prevalence at birth of cleft with or without cleft palate of 34-229 per 10,000 births, and even more pronounced variation for isolated cleft palate, with prevalence of 13-253 per 10,000 births,” (Mossey, Little, Munger, Dixon & Shaw, 2009). The isolated cleft palate is less common, presenting in one is every 1574 births (American Speech-Language-Hearing Association, 2018). The prevalence of cleft can also be related to geographic portions of the world. Asian and Native American populations have reported prevalence rates as high as 1 in 500. European populations are approximately 1 in 1000, whereas African population have a reported prevalence of close to 1 in 2500 (Crockett & Goudy, 2014). Chandrashekar, Mahanantshetti, Leelavathy & Sheriff (2015) report that among racial groups, Caucasians are affected at a rate that is twice that of African Americans and the Asian and Native American population can be affected at a rate of 1.5 times that of Caucasians alone. This variety of ranges indicates that the occurrence of either cleft lip or cleft palate comes with varying possibilities.
There is no one direct cause for cleft lip and cleft palate. Most cases of cleft lip and/or palate is thought to result from multifactorial inheritance. This closely working together with an interaction between the persons genes and specific environmental factors (American Speech-Language-Hearing Association, 2018). Multifactorial inheritance is what is thought that cleft palate cause result from (Beaty et al, 2011). Clefting can also be caused by chromosomal difference is individuals born with genetic syndromes (American Speech-Language-Hearing Association, 2018). Clefts of the lip and/or palate can be categorized as syndromic or nonsyndromic. Syndromic clefts are those that occur in association with a recognized pattern of human malformation or syndrome (Crockett & Goudy, 2014). Strong family history of cleft lip and/or palate combined with race, sex and exposure to specific environmental factors can increase and influence the likelihood of a cleft for that individual (American Speech-Language-Hearing Association, 2018). These environmental substances can include tobacco, alcohol, prescription drugs and illegal drugs.
The purpose of this paper is to describe the tools, techniques and strategies used to help children feed who are challenged with a cleft lip and/or cleft palate. The paper will also provide information about feeding that will ensure a child with cleft lip and/or cleft palate will continue to grow and meet their nutritional needs.
Cleft Lip and Cleft Palate Severity
Clefts can encompass a range of severity, either unilateral or bilateral. The classification of clefts is described based on the structures involved. Cleft affect the structure of the face and the oral cavity which can be divided into three categories; those affected with the lip only, those affected with the lip and the palate and those affected with the palate only (Leslie & Marazita, 2013). The study reports, cleft lip and cleft palate have been considered variants of the same defect and what differs between the is the severity (Leslie & Marazita, 2013). As previously stated, severity can be either unilateral or bilateral, meaning a unilateral cleft is comprised of one palatal shelf that is attached to the nasal septum and a bilateral cleft extends through the entire palate and alveolus (Crockett & Goudy, 2014). There is also a classification of a complete and incomplete cleft. A complete cleft involves the length of the primary and secondary palate, becoming a severe health concern and defect. Whereas, an incomplete cleft encompasses only the secondary palate (Kosowski, Weathers, Wolfswinkel & Ridgway, 2012).
Cleft lip and cleft palate develop as a fetus as they grow inside their mother’s womb. The cleft pathogenesis occurs early in the embryonic development and will result from a failure of fusion of various facial processes (Erkan, Karacay, Atay & Günay, 2011). The process of developing these features begins to occur by the fourth week of human embryonic development which is paired with several areas of the oral cavity (Mossey, Little, Munger, Dixon & Shaw, 2009). By the sixth week the fusion of the primary palate is complete (Kosowski, Weathers, Wolfswinkel & Ridgway, 2012). The severity of either the cleft lip and/or cleft palate will indicate the reaction time for feeding intervention and surgical intervention for the health benefit of the infant. The infant will be assessed after delivery in order to create a plan that will be individualized to them.
Feeding with Cleft Lip and/or Cleft Palate
Problems associated with feeding difficulties
Problems associated with feeding an infant with cleft lip and/or cleft palate vary depending on the type of cleft and the severity of the cleft. The problem of feeding can vary depending on the infant’s cleft and neurological capacity. The feeding problem can be minimal for an infant with cleft lip or palate and much more severe for an infant with neurological complications (Chandrashekar, Mahanantshetti, Leelavathy & Sheriff, 2015). Commonly, there is a difficulty in latching to either a breast or feeding bottle because the infant cannot obtain an oral seal. The inability to latch properly will result in sucking problems and inadequate intake of food (Ize-Iyamu & Saheeb, 2011). The ability to suck efficiently is compromised for cleft lip and palate babies. The concern of proper weight gain become a priority for children with cleft lip and cleft palate. The weight of infants who are challenged with a cleft lip and/or palate is continuously a concern for both parents and clinicians. It is presumed that infants in their early stages of life are challenged with weight gain because of low birth weight, feeding problems, psychological dynamics, the effect of associated malformations or a combination of these listed factors (Chandrashekar, Mahanantshetti, Leelavathy & Sheriff, 2015).
The common difficulties during or after eating can determine if the infant will be able to provide adequate nutrition for their body through feeding orally alone. Babies with clefts usually have the inability to suck efficiently, they will have shorter sucks, higher swallowing ratio and inability to generate a negative intraoral pressure while feeding (Iza-Iyamu & Saheeb, 2011). According to Iza-Iyamu & Saheeb (2011), the inadequate feeding problems will result in a reduced weight for the age of the infant. In the study from Chandrashekar, Mahanantshetti, Leelavathy & Sheriff (2015) reported by Lee J in 1996 that 55.00 percent of infants with a combination of cleft lip and cleft palate and 83.90 percent of infants with cleft palate alone experience feeing problems. The most common feeding problem reported was nasal regurgitation followed by vomiting (Chandrashekar, Mahanantshetti, Leelavathy & Sheriff, 2015). The cause of nasal regurgitation or chocking in infants with cleft palate results from the inability of the palate to separate the nasal and the oral cavities (Goswani, Jangra & Bhushan, 2010). Another problem that can occur with feeding is excessive air intake that can cause excessive burping or choking while the infant is feeding, as well as feeding time length which will tire both the infant and the caregiver (Goswani, Jangra & Bhushan, 2010). Gailey (2016) reported that synchronization of the sucking-swallowing-breathing mechanism is critical in preventing the infant from aspiration or nasal regurgitation. Observing an infant who is faced with cleft lip and/or cleft palate while eating will take a lot of patience of the caregivers as well as creativity to help the infant meet their nutritional needs while feeding (Chandrashekar, Mahanantshetti, Leelavathy & Sheriff, 2015).
Goal of feeding intervention with cleft
An important time for the mother and the neonate is the feeding process where a bond is being created between the mother and baby. During this time the infant is training to accommodate for future complex feeding and eventual speech development (Gailey, 2016). With feeding as a contributing problem for the health of an infant with cleft lip and/or palate the main goal of feeding intervention is to ensure that there is adequate intake of milk for proper hydration and nutrition, as well as growth and development prior to surgery (American Speech-Language-Hearing Association, 2018). With intervention options, excluding surgery, there are ways to warrant that an infant will receive enough nutrition to build up birth weight before surgical intervention can occur. According to Gailey (2016), an infant requires two to three ounces of milk (breast or formula) per pound of body weight per day for proper supply of nutrition and for normal development. With this being said for most infants this would correlate with 20 to 30 ounces of fluid per day. As previously mentioned, feeding for infants with cleft lip and/or palate can tire both the infant and the care taker depending on the feeding time and the infants’ ability to feel overall. The idea of cleft lip and palate intervention will help the infant and the care taker to enable a better feeding experience.
The concern that arises about inadequate nutrition can be aided with the use of devices. The importance of adequate nutrition for an infant with either a cleft lip and/or palate in the time of presurgical phases is invaluable (Gailey, 2016). A child without a cleft are expected to gain 0.17 kg per week from birth to 12 weeks of age. As imagined, this will be harder to achieve for cleft infants (Gailey, 2016). Because an infant with a cleft will have an increased eating time, the problem of the need for more calories comes about. Usually, the increased effort expended by the cleft infant will result in delayed growth (Gailey, 2016). As providers give support to care takers involving feeding, the goal to achieve is adequate nutrition for the infant using appliances and methods until the infant can get surgical assistance in repairing their cleft.
Intervention
Common strategies to help feeding
The strategies that can be used to aid feeding for infants with cleft lip and/or cleft palate include: feeding appliances, holding techniques, specialized nipples and bottles and surgery. A feeding appliance is used to obturate the cleft and restores the separation between the oral and nasal cavities (Goswami, Jangra & Bhushan, 2016). The feeding plate can help reduce chocking, facilitates feeding, reduces nasal regurgitation and it can shorten the length of feeding time (Goshwami, Jangra & Bhushan, 2016). Using holding techniques such as putting the infant in an upright position while feeding can help prevent the occurrence of nasal regurgitation or aspiration. As a caretaker, while feeding an infant with cleft palate or cleft lip, it can be important to add jaw and cheek support as needed (American-Speech-Language-Hearing Association, 2018). Other feeding modification that can be used include: specialized bottles and specialized nipples. Lastly, surgical assessments and procedures are used to give the child the best chance for quality of life. “Primary surgical procedures consist of initial repairs of the lip or palate (Chanrashekar, Mahantshetti, Leelavanthy & Sheriff, 2015).
Bottle feeding
Gailey, (2016) reports on infant feeding and swallowing, the challenges of feeding with cleft patients and feeding modifications. Feeding complication faced be infants with cleft lip and/or palate include poor oral suction, inadequate volume intake, length feeding time, nasal regurgitation, excessive air intake, coughing or choking (Gailey, 2016). The inability to create a complete seal on the nipple can cause any of the previously listed challenges to occur. The author states the amount of liquid an infant should receive in order to maintain at a healthy weight, the modifications for bottle feeding can help this. The goal of feeding modifications is to enable the cleft infant to get enough food for nutritional supply and to help the child reach normal development (Gailey, 2016).
Because there are various types and severities of clefts, the feeding techniques used should be unique to each patient. Some of the bottle modifications include: nipple shields, modified nipples and modified bottles. An assessment with a feeding specialist will be done during a normal feeding session with either the infants’ mother or caretaker. After the assessment is complete the specialist will determine which modification or technique will be best for the infant (Gailey, 2016). When feeding problems are discovered instantly, feeding can be aided quickly with specialty bottles to ensure adequate intake of food. Specialty bottles work in collaboration to improve feeding and aid oral-development for the infant (Gailey, 2016). Commonly, the modifications that are made the most are dealing directly with the nipple of the bottle. The following features of a specialized nipple will facilitate better feeding: pliability, changing the nipple size and shape and modifications to the nipples hole diameter (Gailey, 2016). As Gailey (2016) reports, the specialized nipples used for feeding infants with cleft lip and/or cleft palate are unique to the infants’ ability to complete each phase of suck-swallow-breathing mechanism. The characteristic of the different nipples provide assistance for a different skill. The traditional hole of a nipple attached to bottles allows milk to drip at a steady rate from the tip of the nipple (Gailey, 2016). A modified nipple may have certain characteristics such as a broad, flat, or thin nipple and a nipple with various holes and cuts to allow for the best fluid flow for the patient.
Gailey (2016) also reports on specific bottles that are commonly used with cleft patients. A few names of bottles used include: Cleft Palate Nurser, Medela SpecialNeeds Feeder and vented bottles. The characteristics of the Cleft Palate Nurser incorporate the idea of a soft plastic bottle that is easily compressible. This bottle can be squeezed by the caretaker and assist the flow of the milk to the infant. There comes a disadvantage as well, this type of bottle requires coordination between the caretaker and the infant to prevent from too much liquid entering the mouth too quickly (Gailey, 2016). The Medela SpecialNeeds Feeder is designed for infants who have a minimal sucking ability. This bottle has 5 parts, one of the parts being a valve. The valve of this bottle keeps the milk in the nipple so that when the infant compresses the tip of the nipple the milk can then flow. This is a commonly used bottle because it allows for a wide range of cleft infants because of its versatility (Gailey, 2016). A vented bottle is made with an internal vent. An example of a vented bottle is the Dr. Brown bottle (Gailey, 2016). An internal vent can decrease pressure and reduce the amount of air bubbles that occur in the feeding process. When there is a decrease in pressure it is believed that it will decrease the amount of air sucked in while feeding, this can reduce colic, spit up, burping, and gas (Gailey, 2016). Lastly, an important detail that is commonly missed when coping with new information about an infants’ cleft lip and/or palate is the cost of the specialized bottles or nipples. The price range for specialized feeding devices can range from 20 to 30 dollars per bottle. The most important factor for the cleft infant is that the caregiver can provide nutrition that is adequate for their infant by working with a feeding specialist. In conclusion of this study, “choosing the appropriate feeding technique must be individualized to allow normal function of the suck-swallow-breathing mechanism, as well as the development of oral-motor function,” (Gailey, 2016).
Appliances
A common appliance that can be used in place until a cleft lip and/or palate can be surgically corrected is a feeding plate. The feeding plate is designed to restore the basic function of mastication, deglutition and speech production (Goswami, Jangra, Bhushan, 2010). There are various types of feeding plates that enhance the ability for the infant to feed. Ekran, Karaçay, Atay & Günay (2011), introduced the idea of a feeding plate with a special feature for an infant with cleft palate. The authors report that “a feeding plate is a prosthetic aid designed to obturate the cleft so that the infant can generate negative pressure within the oral cavity which is necessary for sucking,” (Ekran, Karaçay, Atay & Günay, 2011). The plate can be used to correct the tongue posture as well as helping to facilitate swallowing. Goswami, Jangra & Bhushan (2016) explain that the appliance has a rigid platform the baby can press the nipple onto the platform to help extract milk. Also, the appliance can prevent the tongue from entering the defect which could ultimately interfere with the growth of the palatal shelves toward the midline.
Ekran, Karaçay, Atay & Günay (2011), reported a technique created to make an individualized feeding plate was used. The plate that was used had an extension off the feeding plate which was made of soft plastic specifically for the velum, also known as the soft palate. The purpose of the soft plastic extension was for flexibility which allowed for synchronized movement of the extension with the soft palate while in use (Ekran, Karaçay, Atay & Günay, 2011). The reason this attachment was made was “to prevent nasal regurgitation of the oral liquid,” (Ekran, Karaçay, Atay & Günay, 2011). The sole purpose of the feeding plate is for the nourishment of the infant.
A feeding plate must be fitted and individualized to each infant specifically. Ekran, Karaçay, Atay & Günay (2011), reported that for the feeding plate used they placed the infant in a downward position to prevent from any airway obstruction or aspiration. The impression was taken on the infant and then there was further work done to begin to fabrication process. Because the appliance was specialized with a soft plastic specifically for the velum area of the palate, there was a step in production of this feeding place for that process of attachment. Usually, a conventional feeding plate will have a rigid bulb that will not move with the soft palate during swallowing which may only work for select patients (Ekran, Karaçay, Atay & Günay, 2011). Goswami, Jangra & Bhushan (2016) briefly describe the processed they reported on for the impression phase of the feeding plate fabrication. The authors indicated that the baby was placed in a downward facing position to avoid aspiration. Goswani, Jangra & Bhushan (2016) noted that during the impression-making procedure the infant was crying which ensured a continuous open air way. A resin was then used to form the plate and further there was an attachment of stainless steel wires to hold the appliance in position while the infant is feeding. Finally, when the feeding plate in complete there is an appointment for the fitting of the appliance.
The advantages of the feeding plate for the infant is focused mainly on nutritional intake. When a feeding appliance is placed, its purpose is to aid the infants’ ability to create sufficient negative pressure and allow for adequate sucking and decrease the amount of food that flows out through the nasal cavity instead of being swallowed by the infant for nourishment (Goswanu, Jangra & Bhushan, 2016). For the infant studied in Ekran, Karaçay, Atay & Günay (2011) report, the feeding plate was successful at providing the adequate nutritional intake, furthermore, the infants weight gain was normalized after consistent use of the appliance. It is important that the cleft infant is meeting the nourishment requirements at an early stage so they are able to grow and receive more complex procedure at the appropriate age.
The disadvantages of the feeding plate may differ from patient to patient, but include the idea that in a conventional feeding plate, the bulb does not move with the soft palate during swallowing which may result in no help for the infant to meet their nutritional needs as well as the possibility of irritation during swallowing (Ekran, Karaçay, Atay & Günay, 2011). Infants grow at a rapid rate which brings along the challenge of constant fabrication of a new plate. Although obturators can facilitate healthy weight gain, there is a struggle associated with the motivation needed by caregivers. The obturator requires frequent follow ups for modifications while the infant grows (Chandrashekar, Mahantshetti, Leelavanthy & Sheriff, 2015). Also, there is a need for plate maintenance to maintain good oral hygiene for the infant. Infants born with cleft lip and/or palate begin to see pediatric dentists for earlier care versus the average child born without a cleft (Goswami, Jangra & Bhushan, 2016). Although the frequent adjustments may be tiring for the infant and the caretaker, the feeding plate can eliminate the immediate problems of proper nourishment and prevent infection for infants who are already debilitated (Goswami, Jangra & Bhushan, 2016).
Surgery
Infants who are challenged with cleft lip and/or palate usually result in surgical intervention to provide a better quality of life. After a child is born, there is immediately and assessment by the surgeon to evaluate and examine the infant. The sites that will show clefts include: the upper lip, alveolar arches, nostrils and primary and secondary palates (Crockett & Goudy, 2014). The facial areas that may contain clefts are inspected thoroughly. Crockett & Goudy (2014), explain the common milestones in their clinic as well as in general for a range of clinics that provide care for cleft lip and/or palate. As the infant is on their journey toward surgery the surgeon can provide counsel and guidance for the parents or caretaker (Crockett & Goudy, 2014). An important area to monitor leading up to the surgery is the infants feeding and weight gain. There is preoperative planning that takes place for the surgeon to follow as they perform the surgery. Sometimes, there are cases that need a two staged repair process for the best result for the given child. Generally, when leading to a surgery for cleft lip or nasal deformity repair the infant should be weighing in at around 10 pounds and the surgery is usually performed during the first year of life, but can be performed as early as considered sage for the infant (Crockett & Goudy, 2014). Research shows that choosing to wait until 4 or 5 moths when possible is a safe option for the infant in regards to anesthesia, accuracy of the repair and parental acceptance (Crockett & Goudy, 2014). Surgeries that involve cleft palate also have suggested guidelines to follow before operation. When the surgeon is assessing a cleft palate they will look for the type of cleft and the width should also be evaluated which is later used to select the technique that will work best for the cleft infant. When considering the surgical repair of a cleft palate in an appropriately developing child, the standard is to perform the surgical procedure before 18 months of age or earlier if possible (Crockett & Goudy, 2014). Crockett & Goudy (2014) report that cleft palate repair as early as 6 months can enhance the speech outcomes and prevent articulation disorders. However, if the surgeon is able to perform the palate repair before significant speech develop this could also help the patient to develop speech and articulation at a more normal rate.
Postoperative care could hinder the infant if it is not done correctly. An important task after the operation for either cleft palate or cleft lip is feeding. As reported by Gailey (2016), he indicates that some places may recommend a 3 to 5-day break from bottle feeding after operation and switch over to syringe feeding during this time. But, Gailey (2016), reports that after surgery the infant should continue to presurgical feeding regimens to decrease confusion for the infant and the caregiver and maintain adequate nutritional intake. Wound care is also crucial for the infant after their procedure is complete. The main goal for care after the procedure is to provide pain relief for the patient as well as adequate nutrition. The typical hospital stay for an infant after cleft lip or cleft palate repair is one day to monitor their hydration after surgery. After the child is sent home they will have an appointment for a follow up with their doctor to monitor the healing and to give the parents counseling on the importance of remaining vigilant of the healing incisions (Crockett & Goudy, 2014).
Long term impact
With cleft lip and/or palate there are long term effects that persist in the child’s life. “Effects on speech, hearing, appearance, and psychology can lead to longlasting adverse outcomes for health and social integration,” (Mossey, Little, Munger, Dixon & Shaw, 2009). Usually, children faced with these disorders need multidisciplinary care from birth to adulthood (Mossey, Little, Munger, Dixon & Shaw, 2009). With all of the aids introduced to facilitate better feeding for infants with cleft lip and/or palate, this will only be the beginning of their continuous health struggles that they may face.
Conclusion
Discussed within this paper are various feeding appliances, techniques and methods to assist an infant with feeding who is challenged with a cleft lip and/or palate. Some of the common appliances used and recommended are custom feeding plates to block the cleft and facilitate easier feeding until surgery can be completed as well as specialized bottles and nipples that will help the infant to meet the adequate nutritional needs for growth. It is common that either a feeding plate or specialized bottles and nipples are used momentarily until the infant is able to receive surgery. Surgery can be long and complex, surgeons want to ensure that the infant is at a healthy weight and meeting their nutritional needs before proceeding with surgical intervention. There is controversy associated with feeding plate indicating that the plate could further damage the soft portion of the palate and in return hurt the infant.
The purpose of this paper is to describe the tools, techniques and strategies used to help children feed who are challenged with a cleft lip and/or cleft palate. The paper will also provide information about feeding that will ensure a child with cleft lip and/or cleft palate will continue to grow and meet their nutritional needs. Although intervention before surgery can be costly, these techniques and appliances listed throughout this paper will allow the infant to grow and intake the adequate amount of food until the time of surgery.