Almost all babies with a cleft palate have some trouble feeding when they are first born. The open palate makes it very hard for your baby to suck. The baby can only get the formula out of a bottle by pressing the nipple against the gums or roof of his mouth with his tongue. It is even harder for the baby to suck and swallow when he has trouble breathing. To find out if your baby can suck, swallow and breath safely, the doctor may order oxygen level tests and special swallowing tests that are done by a video x-ray during feeding.
One special swallow test is called a videofluoroscopic swallow study. This test can also be called a Modified Barium Swallow. A radiologist and a developmental pediatrician, nurse practitioner or speech pathologist perform this test.
Your baby is given formula, breast milk, and/or food with barium which makes the liquid or food visible during the x-ray. When your baby swallows, the movement of liquid or food from the mouth to the esophagus is closely watched. If liquid or food goes into the airway, it is called aspiration. This can cause choking, pneumonia or asthma. However, some babies do not choke or cough with aspiration. This is called silent aspiration.
If liquid or food goes up into the back of the throat or out the nose, it is called nasopharyngeal reflux. This often happens when a baby has a cleft palate and can increase the risk for choking or aspiration.
If needed, the swallow study is used to test different textures, nipples or bottle systems to learn what your baby needs to swallow safely. Using thickened milk, a different nipple or different flow rate may prevent aspiration and/or nasopharyngeal reflux. A team working together can make a plan to feed your baby safely and also teach normal feeding patterns.
There are special nipples and bottles you can use to help your baby eat. Most babies can be fed with a preemie or regular nipple with an enlarged cross-cut X. This means a larger X-shaped cut is made at the end of the nipple so the baby can suck more easily. (The milk should come out one drop at a time when the bottle is turned upside down. The X should stay closed until the baby opens it by sucking.) The X size should be adjusted according to the amount of milk your baby is able to control. If your baby does not seem to be getting enough milk through the nipple, try making the X a little bigger. If the formula seems to come out too fast, cut a smaller X in a new nipple. The X should be made with two cuts that are each about ¼” long.
If your baby is very small and weak, you should use a “premature” nipple, since it is soft and easier to use. This premature nipple is cheap and easy to find at the hospital. As the baby gets stronger, his sucking may make the premature nipple collapse. Then it is important to change to an infant nipple with an enlarged X-shaped cut.
Bottles with disposable liners flow too slowly for the baby to get formula easily. A Volufeed® makes it easier for your baby to get formula out of the bottle. The Volufeed® also is easier for you to hold close to the nipple, so that you can support the baby’s chin and cheeks with your fingers. Doing this helps your baby use the chin and cheek muscles to suck the formula from the bottle. Stroking his chin with your fingers will also encourage your baby to suck when he begins to get sleepy.
There are many different nipples and bottles on the market to feed a baby with a cleft. Your doctor may recommend one of them. The Mead Johnson Cleft Palate Feeder has an already enlarged cross-cut X on the nipple with is placed on a squeeze bottle. The person feeding the baby can squeeze to help the baby feed. To prevent choking, be careful not to squeeze the bottle when the baby is stopping to breathe.
The Pigeon nipple has a Y-cut. The nipple is softer on the bottom making it easier for formula to be released into the baby’s mouth. The collar on the bottle can be tightened or loosened to change the flow of formula.
The Special Needs (Haberman) Feeder has a squeezable nipple with a slit. There are three marking on the nipple to allow three different flow rates. A special valve allows a slow and even flow of formula.
When you are feeding your baby, hold him sitting up. When he is sitting straight up, the formula is less likely to go into his nose. You should help hold his head by putting your thumb on one corner of his jaw and your fingers on the other corner of his jaw. While you are feeding the baby, tilt the bottle up a little so the nipple is always filled with formula. This will help your baby swallow less air. Feeding can be made easier if the nipple is angled to the side of the mouth away from the cleft.
Because of the cleft palate, your baby will swallow a lot of air with feedings and will need a lot of burping. He should be burped after he has swallowed each ½ ounce. If the baby is very hungry, he may burp after the first ounce and then every ½ ounce after that. It takes a lot of energy and effort for a baby with Pierre Robin sequence to eat, especially if there are breathing problems, so limit his feeding time to 30 minutes. The total time, including burping and a diaper change, may be 45 minutes. If he takes more than 30 minutes to eat, the baby will start to use more calories than he gets from the formula.
When you are feeding your baby, do not let too much formula go into his mouth at one time. If you notice any choking or coughing with feedings, tell your doctor or nurse. Coughing and choking with feedings can be serious; you should call your doctor or nurse right away.
Your baby may need extra help to gain weight, especially if there is breathing trouble. If your baby needs to gain more weight, your doctor, nurse or nutritionist can teach you how to add more calories to the baby’s formula. If your baby has lost a lot of weight or is having trouble sucking, swallowing and breathing, he may have to be fed with a stomach tube (nasogastric tube). This is a soft tube that is put into your baby’s nose and down into the stomach. You give your baby formula or breast milk through the tube if he cannot drink enough by bottle. You will learn how to do these feedings so you can do them at home. The baby will earn to bottle-feed as he gets stronger and is able to breathe in between sucking and swallowing. Feedings will be much easier as your baby grows. Rarely, babies need a gastrostomy tube, a feeding tube that is put into the stomach with surgery.
Some mothers ask if they will be able to breast-feed their baby with Pierre Robin sequence. Most babies with Pierre Robin sequence cannot breast-feed. The opening in the palate makes it impossible for the baby to seal off his mouth and create the suction needed to get enough milk. This is like trying to suck liquid through a straw with a large hole in it. Some mothers choose to pump their breast milk and give it to their babies by bottle or tube.
As your baby gets older, he can have strained foods and table foods at the same age as any other baby. This is true as long as he does not have breathing trouble, and he has been gaining weight well in the early months of life. Ask your doctor before starting spoon-feeding.
April 15th, 2013 | The Heads Up!!! Foundation recently donated $3,000 to the Cleft and Craniofacial Program at Riley Hospital for Children at IU Health. The gift will pay for the purchase of the “Craniofacial Family Notebook” which is given to parents of newborns at their first clinic visit. The notebook contains valuable educational information about… Continue Reading
February 24th, 2013 | The sweet taste of maple syrup will be flowing at the National Maple Syrup Festival on the first two weekends in March, and all the proceeds from the festival – going to The Heads Up!!! Foundation – will literally help put a sweet smile on the face of hundreds of children born with cleft palates and other facial anomalies. "Each year this… Continue Reading
January 23rd, 2013 | As any experienced parent knows, every developmental stage brings not only new skills that delight, but often difficult behaviors that challenge. The first time that most parents realize this fact is when their sweet baby becomes a “terrible” toddler. Below is a summary of some of the typical, but difficult behaviors that appear in this… Continue Reading
