Feeding of Infants born with CL and/or CLP

FEEDING 101: BABIES WITH CLEFTS

Disclosures No Relevant Financial relationships No Relevant Non-financial relationships

Will be discussing specific bottle types for informational purposes only; no financial compensation received

Why Worry About Clefting and Feeding? CLP is the most prevalent birth defect in the USA (CDC 2014)

Nearly 50% of SLPs don’t feel comfortable treating a child with a cleft (Bedwinek, Kummer, Rice, & Grames 2010)

An evidence based “gold standard” currently does not exist for feeding a child with a cleft

Concluding Factor….Poor feeding skills are relatively common in newborns with cleft palate and CLP. Treatment for feeding problems may be needed beyond the first year of life.Babies with more severe clefts or with syndromes will typically have more feeding difficulties.

What is measured in feeding?SuctionCompression Nutritive SuckingSucking performance and feeding abilityFeeding efficiency

Foundational PrinciplesChildren with CP (+/-CL) are at NO greater risk for aspiration at any stage of development (Shelton et al.,1966)

FEEDING issue, not SWALLOWING issueSwallowing mechanism is grossly intact

All airway protective mechanisms unaffectedVF closure, laryngeal elevation, epiglottal deflection

Anatomical differences are typically in the nasopharynx region

EXCEPTION: Children with syndromic Clefting

Normal Newborn FeedingOral Phase – two requirements to “suck”Need intact alveolar ridge to compress nipple with tongue and release fluid Compression

Need intact palate to create negative pressure as jaw opens to enlarge oral cavietyNegative pressure/suction

What is the same in infants with clefts?Rhythmic suck-swallow-breathe pattern (1:1)Baby will root to nippleReflexes

Baby will cup tongue around nipple and initiate rhythmic tongue/jaw movementsOral motor development

Externally, may appear quite similar to feeding pattern of typical infant

(Arvedson & Brodsky. 2002)

What is different? Cleft Lip onlyMay have difficulty forming lip sealExcessive air ingestion

Cleft Palate Alveolar ridge compromisedInability to achieve negative pressureNasal penetration/regurgitationExcessive air ingestionTypically cannot breastfeed

What’s different for babies with clefts Suction - Compression Nutritive Sucking Sucking performance and feeding ability Feeding efficiency

Facts….Babies with smaller clefts (i.e., CL or minor soft palate clefts) were more likely to generate normal levels of suction and compression compared to noncleft babiesPRS babies had more severe difficultiesNeonatal feeding is NOT systematically given in hospital

So… Babies with Clefts Have feeding difficulties caused by

◦ Insufficient suction◦Milk regurgitation thru the nasal cavity◦Low food intake

WHICH OFTEN RESULTS IN “FAILURE TO THRIVE”, which then results in poor growth and inadequate weight gain, which then results in delays in surgery scheduling

Feeding orientation- what we can do as SLPs

PositioningHead, tongue, lips

Milk concentrationFormula vs Breast vs thickening agent

EquipmentSpecialized bottles, nipples, tubes, spoons, cups

Positioning◦ Difficulty latching on and suctioning◦ Nasal regurgitation◦ Ear infections/fluid

SO…Use the marker of elbow pointing to the ceiling or the facing feeder with knees sufficiently elevatedGently push the nipple onto the tongueSqueeze the bottle

Milk concentration◦Poor Suction◦Poor Nutrition◦Poor Weight gain/FTT

SO… Breast Formula Thickening

Breastfeeding & Clefts La Leche League International…lactation consultants, researchers, and mothers and babies are

finding that exclusive breastfeeding is an elusive goal for all but a few babies with cleft palate….” (2004)

* Breastfeeding AT THE BREAST*Fletcher, K. & Ash, B. (2005). The speech-language pathologist and the lactation consultant: The baby’s feeding dream team. The ASHA Leader.

Breastfeeding & Clefts Families/medical professional often given conflicting informationCleft lip only Breastfeeding typically no problem

Cleft Palate +/- LipMajority unable to breastfeed

Breastfeeding & Clefts Assess on individual basis based on size/location of cleft Babies often latch to breast and appear to be feeding well, but are not truly expressing mild effectivelyIf family wants to pursue breastfeeding…ALWAYS obtain pre/post weights using breastfeeding scale to measure intakeInvolve lactation consultant and monitor weight gain closely with pediatrician

Equipment◦Poor Suction ◦Difficulty latching on and suctioning◦Nasal regurgitation

SO…. Bottles Nipples Other

Pigeon Nipple and Bottle

DISADVANTAGES ADVANTAGES

Baby has complete control over bolus extraction (active feeder)Appears similar to “normal” nipplesFits on many standard bottlesMinimal variability between feedersOne of the more economical options

Faster flow rate than other systemsLarger nipple may be too large for small/premature infantsDifficult to provide external pacing/control flow rateOften does not work well with thickeners

Special Needs Feeder –Haberman

DISADVANTAGES ADVANTAGES

Able to vary flow rateAble to manually assist with bolus extraction by squeezing if necessary Available in “mini” size for preemies

More passive feeding systemif manual squeezing implementedAppears very different from “normal” nipplePotential for a great deal of variability between feedersExpensive (around $30/bottle)Often does not work well with thickeners

Mead Johnson Cleft Palate Nurser

Disadvantages:Passive feeding systemDifficult to coordinate with baby’s suck-swallow-breathe pattern (requires training/practice)Difficult to maintain consistent flowConstant squeezing may lead to feeder fatigue

Advantages Can use variety of nipples on bottle

MAM Vented Teat All Ages orMAM Non-vented Teat All AgesA soft orthodontic shaped teat vented to assist the elimination of air. Suitable for any age. Fits standard-necked bottles. Supplied in a pack of two.

Tapered TeatA 2" soft tapered teat. Supplied without a hole. Fits standard-necked bottles.

Softplas Scoop

The Softplas Scoop fits into the MAM

bottle in the same way as a teat

Preemie Nipple

Ross feeding nipple

Alternative Feeding OptionsPigeon valve placed in standard nipplesCross cut nipplesSqueezing “drop ins” (understudy)to assist with extraction

Thickening thoughts….

Rule of thumbIf it takes longer than 20 -30 minutes to feed 3 ounces, the baby is burning more calories than they are taking inA baby should be gaining to weigh at least 10 lbs at 10 wksNasal regurgitation should not be happening unless the positioning is wrong (exceptions- sneezing, being laid down right after eating)

You need to…Watch every feeder to see that they understand instructionsConsult with Dietician, NutritionistSupply equipment or know where the parent can get equipmentProvide written info if possible

Other Feeding Considerations Clefts may be associated with other structural anomalies that can affect feedingMicrognathia (small jaw)Often have airway issues; may need to be fed in sidelying position

Choanal atresia (obstructed nasal airway)Laryngomalaciawww.new-vis.com Feeding and Pre-Speech Characteristics; Children with mild sensorimotor impairment – Suzanne Evans Morris PhD

Other … Surgical considerations:Open cup is preferred feeding methodLiquids only for first 24-48 hours, then advance to soft dietUse side of spoon presentationNO SIPPY CUPS, STRAWS, PACIFIERS, TEETHERS, LOLLIPOPS,

etc. until cleared by plastic surgeonArm immobilizers

Mild Regurgitation may still be seen occasionally due to oral nasal fistula or incoordination

Food Group Foods Allowed Foods to Avoid

Milk and Dairy Products

Meat or meat substitutes

Fruits and Vegetables

Breads and other starchy foods

Other

Children’s Hospitals and Clinics of Minnesota Patient/Family Education 2525 Chicago Avenue South Minneapolis, MN 55404

http://www.childrensmn.org/manuals/pfs/nutr/018729.pdf

Oral HygieneFlexible sticks or cotton swabs can be used to clean residue around the edges of the nostrils and fistulasRecommended using sterile water or bottled water or filtered waterFace clothes can be used to rub gums

Oral thrush is common in this population

Sensory Integration via Dr. MRub the facial clefting site, TOUCH!Taping of lipOral play including but not limited to; raspberries, tongue clicks, smacking, blowing, movement

Great resourcesReid, J. (2004). A Review of Feeding Interventions for Infants with Cleft Palate. Cleft Palate-Craniofacial Journal, 41,4,pp 268-78.http://www.cleftline.org/who-we-are/what-we-do/feeding-your-baby/

Reading List Alexander, R. (2015). Pediatric feeding and swallowing: The essentials. NSSHLA Spring Conference, Minot ND.

Arvedson, J., & Brodsky, L. (2002). Pediatric swallowing and feeding assessment and management. Clifton Park: Delmar Cengage Learning.

Bedwinek,A.P., Kummer,A.W., Rice, G.B., & Grames,L.M. (2010). Current training and continuing education needs of preschool and school-based speech-language pathologists regarding children with cleft lip/palate. LSHSS,41 (4), 405-415.

Bessell,A., Hopper L., Shaw, W.C., Reilly, S, Reid, J, Glenny, A.M. (2011). Feeding interventions for growth and development in infants with cleft lip, cleft palate, or cleft lip and palte. Cochrane Database of Systematic Reviews, Issue 2, Art. No: CD003315.

Breen, M.L., Chibbaro, P.D., & Hopper, G.M. (2009). Nursing care, feeding, and nutrition in the first year. In Moller, K.T. & Glaze, L.E. (Eds.) Cleft Lip and Palate: Interdisciplinary Issues and Treatment (pp 171-208). Austin; PRO ED Inc.

CDC. (2006). Improved national prevalence estimates for 18 selected major birth defects – United States, 1999- 2001. Morbidity and Mortality Weekly Report (Vol.54, pp 1301-1305): Centers for Diseases Control (CDC).

Fletcher, K. & Ash, B. (2005). The speech-language pathologist and the lactation consultant: The baby’s feeding dream team. The ASHA Leader.

Morris, S. (1989). Development of oral-motor skills in neurologically impaired child receiving non-oral feedings. Dysphagia,3 (3), 135-154.

Reid, J. (2004). A review of feeding interventions for infants with cleft palate. CPCJ, 41(30, 268-278.

Reid, J., J, Reilly, S., & Kilpatrik.N. (2007). Sucking performance of babies with cleft conditions. CPCJ,44 (3), 312-320.

Shelton, R.L. Jr. Brooks, A. R., & Youngstrom, K.A. (1966). Patterns of swallow in cleft palate children. CPJ, 3, 200-210.

Wolf, L. & Glass, R. (1992). Feeding and swallowing disorders in infancy: Assessment and management. Tuscan: Therapy Skill Builders.