Due to the open communication between the oral and nasal cavities, a baby born with a cleft palate is unable to make enough suction to draw out formula from the bottle or milk from the breast. Be
cause of this special techniques and feeding systems have been developed. For a healthy full-term baby, these skills are rapidly acquired by the mother and baby but may take perseverance. The key is to find the best technique and system that works for the mother and baby using formula or mother’s breast milk. It is true that newborn babies want to eat and mothers want to feed. These drives will eventually allow them to find the best method. Successful manual bottle feeding, without the need for naso-gastric tube insertion, is usually possible for most un-complicated cleft palate babies in the firs day of life.
PREPARATION BEFORE BIRTH
Preparation for feeding often begins before birth if the baby has been diagnosed by ultrasound during pregnancy. With the ultrasound, one can visualize a cleft of the lip but it is difficult to know if the palate is involved. Since most cleft lips involve a cleft of the palate, we assume that special feeding will be required. Knowing that the baby has a cleft allows the parents to prepare and for counseling before the birth of their child. During the antenatal visit in our office we will review feeding techniques and provide you with a feeding kit to take to the hospital.
We ask that you notify the office when you go into labor or are scheduled for Cesarean section. As soon as the baby is born, you need to contact us to tell us three things: (1) what the baby weighs , (2) what is the exact cleft diagnosis, and (3) whether the palate is involved or not. Dr. Cuadros or our nurse will visit you in the hospital, if possible.
If the palate is not involved, then proceed with the normal feeding plans.
Our office will provide you with bottles and supplies throughout the feeding period at no charge. This was made possible by a generous grant from the international aid organization, SMILE TRAIN, and from a gift of bottles from Dr. Brown’s company.
BREAST FEEDING AND MOTHER’S BREAST MILK
Breast feeding and mother’s breast milk are always the best options, but breast feeding an infant who is born with a cleft palate is rarely, if ever, successful. If, however, there is only a cleft lip but no cleft palate, then breast feeding can be attempted, but may require a more upright position so that mother’s breast tissue fills the gap in the lip or gum. In most cases, when there is a cleft of the palate, then breast feeding should not even be attempted because valuable time can be lost in the first hours after birth when the baby will fatigue without receiving any nutrition. If the baby’s loses weight, then an admission to the neonatal intensive care unit (NICU) with a naso-gastric feeding tube may be necessary. Therefore, proceed immediately to the techniques described below. If mother’s breast milk is to be used then pumping should begin as soon possible. A lactation consultant will assist for correct breast pumping and milk storing techniques.
ASSISTED MANUAL BOTTLE FEEDING
When the palate is involved, some sort of specialized nipple and bottle is always necessary. This can involve a passive or active system. Passive systems rely on the mother to squeeze formula or breast milk into the baby’s mouth. Active systems use the baby’s own jaw and tongue motions to express fluid from the bottle. Most systems use some sort of one-way valve. The two most currently favored options are the Dr. Brown’s and the Pigeon systems. The Haberman, or Medela Special Needs Nurser is used in special cases. The Mead-Johnson feeder is the simplest system, but is rarely used any more.
CLEFT FEEDING TIME
Smaller and more frequent feedings are required in the first weeks of life for an infant with a cleft palate. It takes time for the mother and baby to learn how to best feed. Expect longer than expected feeding times, usually 20-30 minutes. Try to limit feedings to 30 minutes with an additional 10 minutes for burping and changing.
Hold your baby up in a semi-upright seated position with the head and shoulders in one hand and the bottle in your other hand. If you are more comfortable with the baby in the crook of your elbow, place a blanket or pillow under that elbow to hold the baby more upright. Tickle the baby’s lower lip or corner of the mouth with the nipple and place it over the tongue when the mouth pops open. You may need to pull the lower jaw down gently to get the baby’s tongue down and out of the way. When the nipple is placed in the mouth, allow your baby to suck and breathe a few times before beginning. Hold the baby at an angle tilted back in your arm with a pillow under your elbow at 45 degrees. This will limit the amount of liquid that enters the nasal passage. Nasal regurgitation is common and become accustomed to formula coming out the nose. With proper positioning and rate of flow, nasal regurgitation can be reduced. If there is a great amount of liquid in the nose, tilt the baby to a little higher angle, or slow down the flow. Your baby will swallow any extra milk in the back of the throat and the extra milk in the front of the mouth and nose will drain by gravity. You may use a bulb suction in the nose and mouth as needed. Positioning is the most important factor to prevent any extra liquid from sliding to the back of the throat and out the nose. Some babies can lie flat to feed, but most will require some kind of elevation.
DR. BROWN’S CLEFT FEEDING SYSTEM
This is an active system with a one-way valve in which the baby compresses the nipple with it’s gums and jaws to express milk into their mouth. The uni-directional flow valve known as the “Infant-Paced Feeding Valve” is inserted into the silicone nipple at the nipple base and placed into the collar.
Once full assembly of the Dr. Brown’s Specialty Feeding System is complete this system allows the infant to use their own tongue and jaw movements during sucking to adequately express and deliver a fluid bolus into their mouth for safe and efficient swallowing. Continuous squeezing or manipulating of the bottle by the mother is not required. The infant is able to independently express fluid from the nipple. The feeding becomes “infant-directed” and allows the infant to feed safely, efficiently and successfully. This also strengthens the jaw and oral muscles.
1. Fill to the desired amount. The vent will not work properly if you over fill the bottle above the fill line.
2. Insert the plastic valve into the nipple.
3. Make sure the valve is fully secured, flush with the nipple.
4. Insert the nipple into the nipple collar.
5. Make sure the nipple is fully seated.
6. Snap the reservoir fully onto the insert.
7. Place the reservoir into the bottle.
8. Make sure the insert makes full contact with the top of the bottle.
9. Place the nipple collar loosely on the bottle.
10. Be sure to tighten the collar snugly before feeding, but do not over-tighten.
PIGEON CLEFT PALATE NIPPLE
This is also an active system with a one-way valve in which the baby compresses the nipple with it’s gums and jaws to express milk into their mouth. There is a Y cut in the tip of the nipple.
Instructions: Roll the tip with a clean cloth to loosen the opening. Notice the V in the base of the nipple. This is the air vent, and must be positioned on the top of the nipple under the infant’s nose for the nipple to work properly. If the nipple collapses or leaks from that hole, remove the nipple from the cap and massage that area to unclog the vent. You may need to poke a toothpick through the vent to clear it. If the bottle system is purchased, follow package directions for assembly. Put the valve in the base of the nipple, flat side toward the tip. Make sure the nipple lies flat inside the ring and the valve is level with the rim of the nipple. Put the nipple in baby’s mouth normally. The infant’s tongue will activate the flow. If the nipple collapses, you can unscrew the cap and re-tighten it.
MEAD JOHNSON CLEFT PALATE NURSER
This is the simplest and least expensive system and is readily available. Combining it with a Nuk nipple can help close off some of the gap of the cleft. It is a passive system in which the mother must squeeze the soft plastic bottle to express formula or milk into the baby’s mouth. Some cleft palate bottles need compression, or squeezing, along with an enlarged opening cut into the nipple to help the infant get enough flow of milk.
Instructions: Hold your baby up in a semi-upright seated position with the head and shoulders in one hand and the bottle in your other hand. If you are more comfortable with the baby in the crook of your elbow, place a blanket or pillow under that elbow to hold the baby more upright. Tickle the baby’s lower lip or corner of the mouth with the nipple and place it over the tongue when the mouth pops open. You may need to pull the lower jaw down gently to get the baby’s tongue down and out of the way. When the nipple is placed in the mouth, allow your baby to suck and breathe a few times before beginning compression of the Mead Johnson Cleft Palate Nurser bottle. Begin with gentle compression and slowly increase the pressure while watching your infant’s face. If the baby takes more than 40 minutes to eat, or if there is leakage from the nipple ring, it may improve feeding efficiency to increase the crosscut about 1/16th of an inch. Any time the nipple opening is enlarged, take care to squeeze less hard until you know how much the flow of formula has increased. There is little you can do to control the amount of air swallowed during feedings. Your baby will need to burp frequently, but don’t interrupt the feeding too much. For very young infants, all you will have to do to is straighten up the baby by pushing gently up at the back of the waist and lifting the front of the chest with the other hand. Any commercial nipple can be used with the compressible bottle if the tip of the nipple is cross cut into a small ⅛ to ¼ inch X-shape.
MEDELA SPECIAL NEEDS FEEDER (HABERMAN)
This system is often used in premature infants, infants with respiratory problems, or in infants with weak oral muscles. It is a passive system with a one way valve. The mother squeezes the reservoir in order for the milk or formula to be delivered to the baby’s mouth.
Instructions: Assemble the bottle and fill with breast milk or formula according to package directions. There are 3 clear plastic lines on the side of the reservoir, the shorter line is for slower flow. Start by lining up the shortest line on the compressible reservoir with the baby’s nose and tickle the lower lip. Insert the nipple when the mouth opens. Position the nipple on the center of the tongue with the tip turned under the intact part of the palate. The infant will begin to suck. Rotate the nipple until the longest line and greatest flow is under the baby’s nose. If your infant cannot tolerate the higher flow, rotate the bottle back to a slower rate of flow. You may compress the reservoir every second or third suck, or put gently continuous pressure so that more milk will come out of the nipple when the baby compresses the nipple between the palate and tongue.
WHAT IF YOUR BABY CANNOT FEED WELL AND FAILS TO GAIN WEIGHT?
There are times when the above techniques simply to not suffice to provide enough nutrition for weight gain. In these cases, a temporary naso-gastric tube is inserted through the nose to increase calorie intake, and the baby is also fed orally by bottle. This requires an admission to the NICU. Once full oral feeding is achieved, the tube is removed and the baby is sent home with the mother. In extremely rare cases, where there are significant other birth defects, a gastrostomy tube may be required as a surgical procedure.
SPECIAL FEEDING CASES
Conditions which may result in difficult feeding include:
• Submucous cleft palate
• Severe GE reflux
• Pierre Robin Sequence with small jaw
• DNA genetic abnormalities
• Other congenital anomalies
AT HOME AFTER BIRTH
Upon discharge from the hospital, the baby will need to be weighed weekly at first, alternating between the pediatrician’s office and Dr. Cuadros’ office. Once stable weight gain is achieved, then weight checks are done every 2-4 weeks until surgery. By the time lip repair is scheduled at 3 -5 months it is hoped that the baby is weighing at least 10-12 lbs.
WHAT IF THE BABY LOSES WEIGHT OR FAILS TO GAIN WEIGHT?
Following discharge from the hospital, if the baby loses weight or fails to gain sufficient weight then re-admission to the hospital may be required for a condition known as “failure to thrive” – which simply means that the baby was not getting enough nutrition. During this re-admission a full nutritional, medical and feeding assessment will be done to determine the cause of the failure to thrive.
FEEDING AFTER SURGERY
After lip or palate surgery, sucking from any bottle or pacifier is restricted for up to one week. In addition, elbow guards are placed to prevent the baby from touching his or her face. Most baby’s are admitted for two nights after surgery. You will be instructed on how to use the special postop feeder, the Zip-N-Squeeze bottle, which looks like a bird feeder. The specially designed ultra squeezable bottle allows the user to easily dispense and control flow to suit baby’s needs. By shortening the spout, more flow control can also be obtained. There is a soft silicone tube through which liquid and formula is expressed. A syringe or sippy cup can also be used. Feeding begins in the recovering room with sugar water, Pedialyte or water.
Day of surgery ………………………….clear liquids, Pedialyte or mother’s breast milk
1st day after surgery …………………½ strength formula
2nd day after surgery……………….. full strength formula
7 days after surgery …………………..resume bottle feeds and pacifier,
…………………..begin solid foods appropriate for age
If mother’s breast milk is being used, it can be given immediately after surgery in the recovery room.
For assistance and to receive more feeding supplies, contact our office 505-243-7670