Published: June 20, 2007
Updated: June 20, 2007
Some of the earliest concerns you may have as a parent of a child with a cleft may center around feeding, nutrition, and weight gain. The cardinal rule is not be afraid to ask questions or seek support. Typically, one individual on the team specializes in assessing and dealing with feeding concerns. It may be the speech/language pathologist, a physician assistant or nurse specialist. Don't hesitate to call the coordinator or anyone on the team and ask to be referred for consultation.
Before your baby was born, you may have made a decision about how you wanted to feed your child. Some mothers prefer breast-feeding, while others prefer to use a bottle. In many cases, you will be able to feed your baby the way you originally intended. In other cases, depending on the nature of your child's cleft, you may have to alter your feeding approach. Remember, parents of babies without clefts sometimes have difficulties with feeding. Remember also, that early anxiety or preoccupation with concerns about upcoming surgeries, etc. may make it impossible for you to focus on feeding concerns until you get home from the hospital or perhaps even until you have spent a week or two "winging it" or using whatever technique or techniques were suggested in the nursery.
You may only need reassurance that things are progressing normally. You may need to make some minor adjustments in timing of feedings, calories per ounce or positioning, or you may need to make some more complex adjustments or changes. Talking it over, you and the team's feeding specialist will decide together what needs to be done, if anything. He or she will provide ongoing support as needed during the newborn period, before and after planned surgeries and at each stage of feeding development requiring the mastery of new skills.
The feeding specialist's job is to match your baby's needs and your family's needs with the best of current feeding devices and techniques. Many parents arrive home with their new infant having been told nothing special about the possible challenges of feeding a child with an unrepaired cleft lip and/or palate. Others are told or believe wholeheartedly that they have to use a certain device such as a "lamb's nipple" or a cup or a syringe to feed their new infant and they may fear some harm will come to the baby if they feed any other way. Others receive lots of conflicting advice and may purchase and try every nipple, cup, syringe feeder and bottle on the market. Each of these scenarios is likely to lead to frustration and inefficient feeding.
The good news is that babies are very adaptable. Their oral coordination and endurance mature fairly quickly. The fact is they may learn to ingest enough calories in spite of lack of advice or overabundant advice. Feeding, however, should be an enjoyable experience for your baby and for you. The process adopted should optimize active, synchronous use of the oral musculature. To avoid early battles and bad habits, a feeding consultation should be initiated while in the hospital or within the first two weeks of life.
Typically, babies with a cleft of the lip only have fewer feeding difficulties than those with clefts of the lip and palate, or clefts of the palate only. A wide-based nipple or the soft tissue of the breast will compensate for the open portion of the lip, but when the palate -- the natural barrier between the mouth and the nose -- is shorter than normal or partially or completely cleft, the infant will have difficulty creating and maintaining suction. He or she may have difficulty keeping the nipple in the mouth and may be unable to adequately compress the nipple to extract breast milk or formula in an efficient manner.
Your baby may or may not provide clear evidence that he or she is having trouble feeding efficiently or is frustrated. Some of the frequently noted symptoms include:
Burp frequently: Use orthodontic nipple (fig. C), with cross cut (fig. E) which fills in more of the area of the cleft.
Use squeezable bottle (fig. B) and assist your baby's sucking attempts with the soft bottle.
Use a squeezable bottle and squeeze rhythmically, matching your baby's suck/swallow rhythm.
Check flow from the nipple, should drip slowly through cross cut, not flow; have baby sit upright.
Check flow from the nipple - may be coming out too fast.
Keep a record of ounces taken over 24 hours, then subtract any liquid lost out of the mouth or nose. Consult your pediatrician regarding calories required in a 24 hour period and discuss the possibility of increasing the number of calories per ounce temporarily to facilitate weight gain.
Immediately following the surgery to repair your baby's cleft lip, he or she cannot be fed with a nipple. All babies suck reflexively when they are stimulated around the mouth, when they are sleepy or when they are hungry. This "easy sucking" will not harm the newly repaired lip. The pressure of the nipple and increased suction during sucking and swallowing liquid, however, could be detrimental.
The most convenient and simplest alternative approach to master is a soft-sided bottle you can easily squeeze to control the flow of the liquid, fitted with a "syringe nipple." This is a specially constructed nipple that has a standard nipple ring and nipple base. The nipple base tapers into a length of thin tubing. The end of the tubing is placed in the corner of the baby's mouth opposite the cleft repair-in the case of a unilateral cleft lip repair-or in the center or to either side-in the case of a bilateral cleft lip repair. You will quickly learn to regulate the flow of liquid through the tubing so your baby can swallow in the rhythmical fashion he or she is accustomed to. Your baby may swallow even more air than you noted prior to the repair during the brief period you are required to use this technique. So, frequent burping will be necessary.
If the soft-sided bottles or "syringe nipples" described above are not available to you, you can use a catheter-tipped plunger type syringe or an Asepto syringe fitted with a length of soft rubber tubing. Immediately following the repair of your baby's cleft palate, the limitations on food textures and feeding technique may vary. In general, the more severe the cleft, and the more complex the repair, the more restrictions required. Most situations will be covered if you prepare for liquids only, by cup only, for the first several days. Palate repairs are typically completed between 10 and 14 months of age. Most children are physiologically ready for cup drinking between nine and 12 months and they should be completely weaned from the bottle between 12 and 14 months of age. Hence, if you introduce the cup between eight and nine months of age, your child will be comfortable taking liquids by cup by the time he is admitted to the hospital for palate repair. Of course, there are always exceptions to the above described pattern. The most important thing is that you discuss post palate repair feeding concerns with your surgeon and the team feeding specialist and try to practice the planned approach, if it is any different that what your child is accustomed to before he or she enters the hospital.
Most likely, you will begin spoon feeding pureed baby foods to your child before the cleft of the palate is repaired. Many children, with or without a cleft of the palate have a little trouble adapting to spoon feeding. They may push the food back out or cough or get a little up in their nose. Usually this period of adaptation is brief and if you continue to offer small amounts by spoon they will soon become proficient.
Because the cleft is still open, they may get more than a little up in the nose. Frequently they will sneeze this out or it will go on down with the next bite or be washed out with a suck or sip of liquid. If the nasal passage(s) become noticeably clogged, give baby a little water; if the nose is still blocked, gently suck the material out of each side with a bulb syringe and then rinse with a little more water.
Surprisingly few children have any long-term problems spoon feeding purees or eating table foods. If your child consistently rejects the idea of spoon feeding or cup drinking or just can't seem to coordinate these activities appropriately; he or she is probably not ready for a spoon or cup developmentally. Discontinue and then try again in a few weeks.
After the palate is repaired, any problems you may have been experiencing with increased nasal congestion, decreased suction, etc. should decrease. Sometimes, a small hole or holes called fistulae may remain or develop in the roof the mouth or along the gum ridge at the site of the original clefting. Food or liquid may still come through here at times and rarely, a small "chunk" of food may become lodged in the fistula. Most children become very adept at clearing any liquid or food particles on their own. If leaking or reflux through a fistulae is fairly frequent or bothersome, you should discuss the situation with members of the team. Fistulae can be covered with a lightweight acrylic dental appliance contoured to the shape of the roof of your child's mouth or the hole can be closed surgically.
Good oral hygiene and mouth care is essential for all babies with clefts. After feeding you should keep all of the areas around the cleft clean. Feeding water to your baby after a meal will help remove any milk residue from his mouth. Wipe the baby's gums and any teeth after each feeding with a damp washcloth or gauze pad to remove plaque (a thin, sticky, colorless film of bacteria that constantly forms in the mouth) and any remaining dried milk. If you find the cleft area becoming dry, you can lubricate it with mineral oil or baby oil. You cannot hurt the tissues by employing these procedures; you can provide a healthy environment for emerging dentition and prevent infection.
Ross Laboratories Cleft Palate Assembly comes with two "syringe nipples" per package and can be screwed on the Mead Johnson bottle or any standard neck baby bottle.
Above, left and center: Soft squeezable bottle with cross cut orthodontic nipple (top right). Above, bottom right: Ross Syringe Nipple.
Below: Cross cut in top of nipple.
Mead Johnson Cleft Palate Nurser Unit comes with a soft plastic bottle that works well and a long, cross-cut nipple. This nipple and nipple ring should be discarded and the "syringe nipple" substituted for post surgical feeding.