Cleft Lip and Palate Program

Important Facts

• Weight should be taken and recorded at least once every week
• Keep a feeding log with date, time, amount taken and length of feeding
• Feeding should last less than 25 minutes
• Most newborns during the first few weeks will feed 8-12 times per 24 hours
• Pumped breast milk and infant formula mixed with water should be the only liquids fed through bottles

Goals for your Baby

• Feeding for optimal, adequate growth and development
• Feeding should be less than 25 minutes
• Meet growth and weight goals for corrective surgery (8 pounds or more for lip repair and 18-20 pounds for palate repair)
• Limited pacifier use
• Baby foods fed by spoon starting at 4-6 months based on the feeding progression chart discussed with you by our clinic dietician
• At 6 months, or when there is good lip closure for spoon feeding, offer formula or breast milk from a cup
• Babies needing palate repair should be skilled at drinking from a cup before palate surgery

Types of Special Bottles

Pigeon Bottle –Y-cut nipple with one-way valve; contains an air valve to prevent collapsing while sucking. Large or small nipple options are available and assistive squeezing is possible.

Dr. Brown’s specialty bottle with one-way valve and air vent system to reduce gas.

Haberman bottle with one-way valve and variable flow rates; assistive squeezing is possible.

Tips for using specialty bottles

• Consult with Speech Pathology for bottle selection
• Do not screw the collar of bottle on too tight
• Hand clean bottle and nipples with warm soapy water and rinse well (do not boil or use in dishwasher)
• Replace nipples every 1-2 months
• Check with your surgeon’s clinic for a new supply

Feeding Your Baby

• Follow exact mixing and feeding instructions provided on discharge or in clinic
• Baby should be in a slightly reclined position during and after feeding
• Increase feeds weekly by 5 ml each feed. If you feed 60 ml feeds on discharge, then the next week feeds should be at 65 ml each and 70 ml the following week.
• Burp baby after every few ounces
• Clinic dietician will review infant feeding progression before introducing solid foods
• When child has progressed to table foods, avoid gummy or sticky foods or foods with sharp edges

Weight Gain Goals

Email or call your baby’s weight to the nutritionist weekly.

Goals for Weekly Weight Gain

Age	Weight Goals
1-3 months	6-8 ounces
4-6 months	4-5 ounces
7-12 months	2-3 ounces

Contact Info

For questions related to feeding your infant contact:
Karen Bright, MS, CLL-SLP
brightkl@archildrens.org

For questions related to your infant’s nutrition contact:
Joanna Daughety, RD, LD
Clinical Nutritionist, ENT Clinic
501-364-7541
daughetyj@archildrens.org

Helpful Websites:

• www.cleftline.org
• www.widesmiles.org

Pediatric Otolaryngologist/Plastic Surgeon - These specialists are responsible for the surgical closure of the cleft and related operations which your child may require. Any ear disease, speech disorder or hearing loss, will also be closely monitored and treated by these physicians. 

Audiologist - Since children with cleft palate have an increased risk of ear problems, ongoing audiological surveillance is necessary. The audiologist provides appropriate assessments for monitoring hearing status so that diagnosis and treatment can be made for any cleft-related hearing problems. 

Dental Specialist - The dental specialists include the pediatric dentist, orthodontist, oral surgeon, periodontist, and prosthodontist. These specialists keep track of your child's dental growth and development and provide information on oral hygiene and dental treatment that may be necessary due to the cleft. 

Geneticist - The geneticist alongside his genetic counselor, is available to discuss how clefts of the lip and palate occur and to answer questions about the risk of recurrence with future pregnancies. Later, this specialist can help your teenager understand the cause of a cleft and advise him or her about individual circumstances.

Neuropsychologist - The neuropsychologist is available to discuss you or your child's concerns.
 
Speech Pathologist - The speech pathologist will provide you with information about typical speech development along with suggestions for stimulation speech when your child is very young. Speech and swallowing dysfunction will be closely monitored and appropriate treatments or therapies will be prescribed at Arkansas Children's or if appropriate, closer to home. 

Social Worker - The clinical social worker is available to meet with the family to assist in the psychosocial and emotional aspects of cleft lip/palate. This specialist is aware of services available in the community to which the family can be referred for information on medical coverage, financial assistance, and support groups/services. 

Clinical Nutritionist - The nutritionist assists with any early feeding difficulties and monitors the child¹s nutritional intake. This specialist also provides follow-up of weight gain and height/weight parameters and provides information and support with specific diets related to some of the surgeries. 

Registered Nurse - The nurse is available as a contact person to provide information and ensure that parents understand their child's health needs, treatment plan and follow-up. This specialist assists with the child's presurgical readiness and post-surgical recovery and provides instructions for home care.