1. Feeding of Infants born with CL and/or CLP FEEDING 101: BABIES WITH CLEFTS

2. Disclosures No Relevant Financial relationships No Relevant Non-financial relationships Will be discussing specific bottle types for informational purposes only; no financial compensation received

3. 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

4. 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.

5. What is measured in feeding?  Suction  Compression  Nutritive Sucking  Sucking performance and feeding ability  Feeding efficiency

7. Foundational Principles  Children with CP (+/-CL) are at NO greater risk for aspiration at any stage of development (Shelton et al.,1966)  FEEDING issue, not SWALLOWING issue  Swallowing mechanism is grossly intact  All airway protective mechanisms unaffected  VF closure, laryngeal elevation, epiglottal deflection  Anatomical differences are typically in the nasopharynx region  EXCEPTION: Children with syndromic Clefting

8. Normal Newborn Feeding  Oral 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 caviety  Negative pressure/suction

9. What is the same in infants with clefts?  Rhythmic suck-swallow-breathe pattern (1:1)  Baby will root to nipple  Reflexes  Baby will cup tongue around nipple and initiate rhythmic tongue/jaw movements  Oral motor development  Externally, may appear quite similar to feeding pattern of typical infant (Arvedson & Brodsky. 2002)

10. What is different? Cleft Lip only  May have difficulty forming lip seal  Excessive air ingestion Cleft Palate  Alveolar ridge compromised  Inability to achieve negative pressure  Nasal penetration/regurgitation  Excessive air ingestion  Typically cannot breastfeed

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

12. 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 babies  PRS babies had more severe difficulties  Neonatal feeding is NOT systematically given in hospital

13. 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

14. Feeding orientation- what we can do as SLPs  Positioning  Head, tongue, lips  Milk concentration  Formula vs Breast vs thickening agent  Equipment  Specialized bottles, nipples, tubes, spoons, cups

15. 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 elevated  Gently push the nipple onto the tongue  Squeeze the bottle

17. Milk concentration ◦Poor Suction ◦Poor Nutrition ◦Poor Weight gain/FTT SO… Breast Formula Thickening

18. 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.

19. Breastfeeding & Clefts  Families/medical professional often given conflicting information  Cleft lip only  Breastfeeding typically no problem  Cleft Palate +/- Lip  Majority unable to breastfeed

20. 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 effectively  If family wants to pursue breastfeeding…ALWAYS obtain pre/post weights using breastfeeding scale to measure intake  Involve lactation consultant and monitor weight gain closely with pediatrician

21. Equipment ◦Poor Suction ◦Difficulty latching on and suctioning ◦Nasal regurgitation SO…. Bottles Nipples Other

22. Pigeon Nipple and Bottle DISADVANTAGESADVANTAGES  Baby has complete control over bolus extraction (active feeder)  Appears similar to “normal” nipples  Fits on many standard bottles  Minimal variability between feeders  One of the more economical options  Faster flow rate than other systems  Larger nipple may be too large for small/premature infants  Difficult to provide external pacing/control flow rate  Often does not work well with thickeners

23. Special Needs Feeder –Haberman DISADVANTAGESADVANTAGES  Able to vary flow rate  Able to manually assist with bolus extraction by squeezing if necessary  Available in “mini” size for preemies  More passive feeding systemif manual squeezing implemented  Appears very different from “normal” nipple  Potential for a great deal of variability between feeders  Expensive (around $30/bottle)  Often does not work well with thickeners

24. Mead Johnson Cleft Palate Nurser Disadvantages:  Passive feeding system  Difficult to coordinate with baby’s suck-swallow-breathe pattern (requires training/practice)  Difficult to maintain consistent flow  Constant squeezing may lead to feeder fatigue Advantages  Can use variety of nipples on bottle

25. MAM Vented Teat All Ages or MAM Non-vented Teat All Ages A 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 Teat A 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

26. Alternative Feeding Options  Pigeon valve placed in standard nipples  Cross cut nipples  Squeezing “drop ins” (understudy)to assist with extraction  Thickening thoughts….

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

28. You need to…  Watch every feeder to see that they understand instructions  Consult with Dietician, Nutritionist  Supply equipment or know where the parent can get equipment  Provide written info if possible

29. Other Feeding Considerations  Clefts may be associated with other structural anomalies that can affect feeding  Micrognathia (small jaw)  Often have airway issues; may need to be fed in sidelying position  Choanal atresia (obstructed nasal airway)  Laryngomalacia  www.new-vis.com Feeding and Pre-Speech Characteristics; Children with mild sensorimotor impairment – Suzanne Evans Morris PhD

30. Other … Surgical considerations:  Open cup is preferred feeding method  Liquids only for first 24-48 hours, then advance to soft diet  Use side of spoon presentation  NO SIPPY CUPS, STRAWS, PACIFIERS, TEETHERS, LOLLIPOPS, etc. until cleared by plastic surgeon  Arm immobilizers  Mild Regurgitation may still be seen occasionally due to oral nasal fistula or incoordination

31. Food GroupFoods AllowedFoods 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

32. Oral Hygiene  Flexible sticks or cotton swabs can be used to clean residue around the edges of the nostrils and fistulas  Recommended using sterile water or bottled water or filtered water  Face clothes can be used to rub gums  Oral thrush is common in this population

33. Sensory Integration via Dr. M  Rub the facial clefting site, TOUCH!  Taping of lip  Oral play including but not limited to;  raspberries,  tongue clicks,  smacking,  blowing,  movement

34. Great resources  Reid, 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/

35. 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).

36. 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.