Breastfeeding baby with cleft lip and/or cleft palate: How to do it?

Written by : dr. Asti Praborini Sp.A, IBCLC., dr. Ria Subekti, dr. Shella Riana, dr. Aini, dr. Wilda

What is cleft lip/ cleft palate?

Cleft lip and/or palate is an inborn abnormality (congenital) caused due to the failure of frontonasal prominence (nasal, palate, and lip bulges) unification, which occurs during the first week of pregnancy. The formation of face, jaw, palate, nose, and lips begins at the 4th week of pregnancy. At that time, there will be a movement of cells in the primitive indentation (nasal, lip, jaw, and palate) causing the aforementioned parts to merge and form as lip, nose, jaw, and palate perfectly. Failure of the merge process will cause the formation of abnormal gap or known as cleft.

Cleft can be found on the upper lip (labioschizis) and/or palate (palatoschizis). Cleft lip is condition of abnormal opening or gap on the upper lip that causes both side of the upper lip to disjoint. This gap can occur on one side only (unilateral), and can also occur on both sides (bilateral). The cleft palate is an abnormal opening found on the palate, both hard palate (palatum durum) and the soft palate (palatum molle). This abnormal causes the oral cavity and nasal cavity to connect through a hole with different degree of severity. The gap may form into a small or narrow hole, and can also be a wide and elongated hole, which extends from the upper jawbone to the back.

 

What is the prevalence of cleft lip and/or cleft palate?

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The number of cleft lip and cleft palate occurrence in the world varies, ranging from 0,8 to 2,7 per 1000 births. The variations of number are affected by race. The lowest rates were found within the African, American, and white race (Caucasian) racial groups, whereas the higher incidence rates were found within native American and Asian groups. Based on the research conducted in the United States in 2001, cleft lip and/or cleft palate is the second most common congenital aberration in the world after Down Syndrome.

All cases of cleft lip and/or cleft palate are dominated by the cases of cleft combination by the percentage of approximately 50%,  about 30% of all cases are cleft palate only, and the remaining 20% are cleft lip only. Most of the cases are on one side (unilateral), and about the remaining 10% are both sides (bilateral).

 

What are the problems that may occur in infants with cleft lip and/or cleft palate?

Baby with cleft lip and/or cleft palate has several limited ability especially in their feeding known as feeding problem. Cleft lip disables the baby’s lip ability to suction properly in which is very necessary in order for breastfeed effectively. The existence of cleft palate also causes the pressure in the oral cavity to decrease, resulting to the difficulty to do the suction of the breast.

Other than that, baby with cleft palate has a higher risk of ears infection. The abnormal hole connects oral cavity and nasal cavity causing fluid that comes in from the oral cavity to go in reverse directions into nasal cavity (regurgitation). In the inner nasal cavity there is  tuba Eustachius that connects to the middle ear. Therefore, the gap in the palate may increase the risk of inflammation of the middle ear in infants. Another problem that needs more concerned in infants with cleft lip and/or cleft palate is the risk of failure to thrive. Ineffective suction and the occurrence of recurrent infections may increase the risk of infants experiencing failure to thrive.

In older infants, problems may include difficulty in swallowing food, speech articulation disorders, dental problems, and aesthetic problems. Given the many problems that may arise due to cleft lip and/or cleft palate, the management of these cases require considerable attention from multidiscipline aspects.

 

Breastfeeding Baby with Cleft Lip and/or cleft palate : How to do it?

Breastfeeding baby with cleft lip and/or cleft palate is not easy, but still can be managed. One of the most important things is that the baby has to be fed with breast milk, either direct breastfeeding or indirect breastfeeding, is still better than feeding the baby with formula milk.

Anti-infective substances contained in breast milk, will minimize the risk of infection in infants with cleft lip and/or cleft palate, especially respiratory infections and ear infections. Breast milk also improve the immune response and reduce the risk of infection in postoperative wounds if cleft lip and/or cleft palate operation will be conducted in the following years or in the future. This is contrast to the formula feeding that would increase the risk of respiratory infections, middle ear infections, allergies, asthma, and other diseases that may increase the lifting of the pain in infants with cleft lip and/or palate. As of any parent who has a baby with cleft lip and/or palate should be given  the motivation and assistance to be able to give breast milk to their baby.

Breastfeeding of infants with cleft lip and/or palate should be evaluated on a case-by-case basis. Although we may encounter similarities between cases with each other, individual evaluations of infant suction capacity, the availability of assistive devices, nutritional status, and infant hydration status.

 

Direct breastfeeding to baby with cleft lip and/or palate : Is it possible?

In certain cases, babies with cleft lip and/or palate may be fed directly, subsequent to conducting various evaluations from various disciplines. Babies with cleft lip on one side (labioschizis unilateral) most likely to have the ability of suction. The baby sits in straddle or koala position (the baby is positioned somewhat sitting and facing the mother’s body) and the mother’s thumb covers the baby’s lips at the time of sucking to help the baby make the vacuum condition for the baby suction to be more effective.

Infants with small soft palate cleft can too do suction directly at times. However, unlike babies with cleft lip, babies with even small cleft palate are often have more difficuliest to make a vacuum in the oral cavity. Therefore, even if the baby can do suction directly, a deeper evaluation of the effectiveness of baby’s suction and nutritional status should be undertaken. Under certain conditions the baby may be able to do suction directly and assisted with supplements tools placed in the mother’s breast.

Babies with cleft lip on both sides (bilateral labioschizis) have more difficulties to do suction directly. Based on literature, babies with bilateral cleft lip can still shed directly with the straddle and baby position facing the mother’s breast, but in practice it will not be as easy as it is written in the literature. Infants with this condition usually need a tool for feeding, a special bottle designed for babies with cleft lip and / or palate, such as Haberman Feeder®. Mothers need to be taught how to pump breast milk since the birth of the baby, then mothers and other family members are taught on how to feed the milk using Haberman Feeder®.

Babies with hard palate clefts (palatum durum) have the most difficult suction problems compared to other cases. Babies with a hard palate cleft can be accompanied by cleft lip and alveolar bone (labiognatopalatoschizis) or can be a palate only (palatoschizis). This gap in the palate makes the baby to have difficulties in making a vacuum in the oral cavity, as of often in this case the baby will not be able to do suction directly. Neither the baby with a cleft palate nor cleft lip and palate generally require a special tool for breastfeeding, namely Haberman Feeder®. Like babies with bilateral cleft lips, it is necessary for the mother to be taught on how to how to pump breast milk since the birth of the baby, then mothers and other family members are taught on how to feed the milk using Haberman Feeder®.

Either breastfeeding directly or breastfeeding with a tool, it is necessary to assess the nutritional status of the baby with cleft lip and / or palate on a continuous basis. Infants should be planned with monthly visits to the child polyclinic or lactation clinic to assess infant weight gain, maternal breastfeeding, performance evaluation of the assistive device, and regular provision of motivation to the infant’s parent due to breastfeeding the baby with cleft lip and / or palate is not easy. Often parents experience demotivation then stop to breastfeed or breastfeed for the baby.

 

The use of prosthesis (palatal Obturator) on Cleft Lip and / or palate : How much be Needed?

Prosthesis or palatal obturator is a special tool designed to cover the palate gap temporarily. This tool is generally made of acrylic and orthodontic wire that has been printed in advance in accordance with the shape and width of the gap to needs be covered. The obturator is then mounted on a cleft palate to prevent regurgitation, increase the ability to suck and swallow the baby, and articulation of speech.

This obturator can be made by a specialist oral surgeon who often handles cases of cleft lip and / or palate. Once the device is installed in the baby’s palate, it is necessary to re-evaluate the feeding. The baby with newly fitted palatal obturator will again learn the correct suction technique, therefore further assessment and assistance from a breastfeeding counselor are obligatory. Re-readjustment of the tools needs to be conduction every month, as the jaws of babies grow from time to time.

Based on the literature, there are two expert opinions regarding the use of this palatal obturator. The first opinion states the installation of this tool is highly recommended that the baby can suction and swallow well; a second opinion states the installation of this tool is not recommended given the need for reconciliation every month of use, the possibility of the baby still can not suck properly after use, and increased risk of jaw erosion due to the use of the tool. However, in practice the quality of life of infants with cleft lip and / or palate should be noted. Given the risk of respiratory infections, middle ear infections, difficulty in sucking and swallowing, recurrent regurgitation, and possible failure to grow in infants with cleft lip and / or palate, the use of this obturator palatal should be considered.

Here we describe some examples of cases of breastfeeding babies with cleft lip and / or palate that we have handled in this team.

 

Baby with Cleft Palate in Palatum Molle

Baby A, female, age 2 months 29 days, come to Lactation Clinic Permata Depok Hospital with the mother complaints to feel only small amount of milk came out after pumping. The baby was born in the Maternity Clinic in Cinere, and was said to have a small cleft palate from birth. The baby has difficulty sucking and is often choked from birth. Sucking the breast became less strong and sometimes loose. The mother usually pump the milk and serve it from the baby bottle, but according to the mother the milk came out less and less gradually, thus the baby is given additional formula milk for 12 x 60 ml per day. When the arrival of the baby can suck directly and the mother wants to continue to breastfeed her child up to 2 years.

Body weight of infant at birth 3300 g, and body weight when came in to the hospital is 6175 g. The baby was well-nourished based on the WHO anthropometric standards. On physical examination the baby a soft palate cleft measuring 1.5 x 2 cm extending to near uvula was found; mother with normo to low milk supply. The baby was put to try to consume the milk directly from the breast, with the baby straddle position can suck but still loose, assisted by breast compression baby can do suction more continuously.

Mothers are motivated to continue breastfeeding directly, given counseling about the benefits of breast milk and the dangers of formula feeding, especially in this case. Babies are planned to do suction directly and assist with supplemental nursing system (SNS®). Babies are scheduled for routine control to a lactation clinic or a child polyclinic for frequent evaluation of smears and infant weight increases.

 

Reference :

  1. Goyal A, Jena AK, Kaur M. Nature of Feeding Practices among Children with Cleft Lip and Palate. Journal of Indian Society of Pedodontics and Preventive Dentistry 2012; 30:47-9.
  2. Hopper RA, Cutting C, Grayson B. Grab and Smith’s Plastic Surgery: Cleft Lip and Palate. Lippincott William and Wilkins; 2007:1-44.
  3. Mossey PA, et al. Cleft Lip and Palate. Lancet 2009; 374:1773–85.
  4. Reilly S, et al. ABM Clinical Protocol #17: Guidelines for Breastfeeding Infants with Cleft Lip, Cleft Palate, or Cleft Lip and Palate, Revised 2013. Breastfeeding Medicine 2013; 8:349-353.
  5. Supit L, Prasetyono TOH. Cleft Lip and Palate: Epidemiology, Risk Factors, Quality of Life, and Importance of Classifications. Med J lndones 2008; 17(4):226-239.

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