Other Internet Resources Related to Cleft Lip/Cleft Palate
The material presented here is intended for use by parents as suggestions for caring for an infant born with cleft lip and/or cleft palate. It was prepared by a group of parents from Prescription Parents whose children were born with cleft lip and/or cleft palate and are being treated at various hospitals in the Boston area. For their invaluable help and contributions, appreciation is extended to: Mrs. Richard J. Carey, Mrs. Lois C. LaBonte, Mrs. Marcia L. McGrath, Mrs. Ann Anderson, Mrs. Lillian Rawan, Mrs. Judy Eagen, Mrs. Sandra Lemmo, Mrs. Naomi Towvim, Mrs. Gay Porter, Mrs. Gael C. Sullivan, and Mrs. Caroyn Malfa.
Prescription Parents, Inc., the sponsor of this packet, is a group of parents and professionals interested in the care of the child born with cleft palate. Many of the physicians and specialists treating your infant are active in our group. Further information regarding the group and the special needs of children born with these conditions is available from Prescription Parents on request. You might like to be included on our mailing list and receive our newsletter by mail, you might like to attend one of our informational meetings, or you might like to talk with another mother whose infant is being treated at the same hospital as your baby and who may be able to allay your worries a bit. [Click here for information about the organization].
To formulate the suggestions included here, Prescription Parents sent out a questionnaire to members and compiled their answers; it was felt that the material represents many areas of concern to parents. Any parent with questions, of course, should ask the physician or specialist treating the infant; the information presented here only supplements such advice and contains parental suggestions for caring for your infant. Also, this collection of suggestions are those that worked for some parents and babies. Infants with cleft lip and palate, like all infants, will vary widely and what works for one child does not necessarily work for another. By far it is most important that the baby feel loved and accepted. A relaxed parent who can hold and cuddle his infant lovingly is making the most important contribution to the psychological development of his child.
During the first few confusing weeks our members found that by
taking one day at a time, the problems fell into line and were
resolved. The initial shock, concern, and anxiety that we all
experience wore off as we understood the hopeful prognosis for our
babies.
Parents responding to the questionnaire reported many emotions they felt when they first saw or heard about their babies' conditions. They said they felt fear, confusion, anxiety, and sadness. These emotions were intensified further if, as unfortunately happens, the baby was transferred from the maternity hospital to the pediatric hospital and thus was separated from the mother who remained in the maternity hospital. The mothers indicated that they could not remember what the baby's defect looked like and missed the natural warm feelings a mother has when she can touch and cuddle her newborn. Also, this practice suggests that the baby's defect is more serious than it really is. These and many other feelings are shared by many members of our group; we have all had to deal with grandparents, relatives, and friends who sometimes have misunderstood the baby's problem and its cause.
New parents who are also anxious to know what caused the defect(s) to occur are encouraged to consult a genetic counselor. Usually a presentation by a qualified geneticist reassures parents that these defect occur (once in 750 live births), yet in no way are the parents to blame or responsible for them. Counseling from qualified geneticists are available free of charge through the March of Dimes at New England Medical Center and Children' Hospital Medical Center.
Always keep in mind that the baby's condition is correctable in time. Try to put everything in perspective. Give the baby plenty of love and cuddling, and develop a lot of patience. As with most infants, the first few months are the hardest and this is a time when mother needs her rest too. If this is a first baby, remember that first babies cause additional anxieties anyway; you are adjusting to many things at once.
If the baby cries excessively or is extremely fussy, call your pediatrician as you would with any baby. If you have specific questions or worries about the specific care of the cleft or about feeding, do not let your concerns bottle up inside of you. Call the medical specialist caring for your baby; feel free also to contact Prescription Parents .
A particular method of feeding (bottle, brecht feeder, special nurser, breast) will probably be recommended by your baby's doctor or by the hospital where your baby is being treated. We strongly suggest you follow the method recommended for your baby.
The following sections address the most common methods used; many surgeons or treatment facilities may have more detailed information on the method they recommend. Prescription Parents also has members available to answer questions on any of the methods listed below:
Nipples -- Most mothers found that by using the nipple recommended by the doctor, they would have to make a cross cut with a sterile razor in the tip. (Sometimes the hospital will give you a sterile razor, but they can be purchased in drug stores under the name "Sterisharp"). Cross-cutting can be done on any nipple -- regular, premature, lamb's, etc. Mothers responding suggested that the nipples marked "Cross-Cut" were not cut nearly sufficiently for their babies' needs. You may be quite surprised at how large a cross-cut is necessary for the infant to nurse comfortably. Many mothers answering our questionnaire found that as the baby grew, the size of the cross-cut could be reduced or eliminated entirely. In cutting the nipples, some mothers found that if the cut did not work well by cutting from the outside in, that the nipple could be turned inside out, cut, and returned to its usual position.
The nipples that the hospital sometimes gives you to take home with the baby on discharge are "disposable" and are not as hard for the baby to suck on as those purchased at the store and designed for long-time use. Many mother found that their babies when very young could not suck successfully on regular nipples at all, however, widely cross-cut, but that boiling them for long periods of time softened them and made them easier for the baby. Even in the first few weeks, premature nipples may need this treatment if you baby seems to be having difficulty in getting the formula.
Another nipple which some mothers used was the Curity Therapedic which they cross-cut. They felt that if the baby were gaseous, the rubber extensions on either side reduced the intake of air.
Length of time -- The most frequent complaint is that feeding takes a long time, especially in the beginning. The majority of babies take from thirty to sixty minutes, a significant number reported time up to 1-1/2 hours. There is no real way to solve this problem except to adjust to it. As one mother said, "Perhaps the additional holding and cuddling which these children receive may provide them with an extra measure of affection and reassurance which they need."
Amount --Those responding to the questionnaire also indicated that in addition to a long nursing time on the bottle, the infants tend to eat smaller amounts often and seem to fall asleep on the bottle easily. Several mothers speculated that they work at the sucking on the bottle and thus tire easily.
Position -- Most of our parents found that feeding the baby in an upright position reduced the problem of food escaping into the nose. Several even experimented with using an infant seat to keep the baby upright since newborns tend to naturally dissolve into a little lump when placed upright.
Formula or food escaping into the nose -- Occasionally formula or solid food will come out of the baby's nose. It helps to site him up straighter and wipe the nose. It doesn't seem to bother the baby, so don't let it bother you. If the formula is flowing from the nose and the baby seems to be "glugging" and spluttering, then the size of the cross-cut may be too large. (This is not usual; most mothers err in the other direction, i.e. making the nipple opening too small and having to enlarge it.
Refusal to nurse -- If the baby keeps refusing the bottle, first of all relax. Don't let the baby pick up your tension. Eventually he will learn and start gaining weight. You have to experiment more with the nipple; maybe the opening is so small that he is getting nothing for his efforts and thus is getting tired and frustrated.
Another common complaint is "bubbling." The babies with clefts seem to need more frequent burping than other babies. Sometimes after only 1/2 ounce or an ounce they can have a good size bubble; they seem to swallow considerable air as they nurse. You will find that the baby will let you know when to bubble, but sometimes it is easier to get the bubble up every few ounces rather than waiting until it is "way down under."
Temperature -- Although we have not seen any professional studies on this, a large number of mothers reported that their cleft babies seemed to like their formula warmer than is usual; many reacted negatively even to the baby food when served at room temperature. If the baby is fidgety about nursing or his food, warming it is worth a try. Also the warm formula seems to move the bubbles easier.
Schedule -- The baby with a cleft seems to develop a schedule just as any other baby. It seems to many mothers they are awake a lot due to the length of feeding time. If you have any questions check with your doctor regarding the sleep requirements for your baby.
Training others to feed the baby -- It is strongly advised for the new mother not to feel as if she is the only one who can feed her baby. You learned and so can others. Grandparents, friends, relatives, other brothers, and sisters, and baby-sitters all fed our babies. Having others realize the simplicity of the feeding eases tensions and lessens fears from them. It also makes them more comfortable with this condition. This also prepares the baby for the hospital feedings that are given by different people.
Supply -- Usually the hospital nursery will give you a brecht feeder to take home with you will help you order one. When ordering, refer to it as an "ascepto syringe with a catheter tip." Prescription Parents makes these available on a loan basis.
Always be sure to have two or three on hand in case accidentally one drops and breaks (curiously enough this usually occurs in the middle of the night!) and for your own convenience since these may need to be sterilized depending on your pediatrician's advice. Also, as the baby gets older and increases his intake, the larger syringes (4 oz. size) tend to make the feeding easier for the baby and the person feeding. Your local drug store will order these for you, or hey are readily available at the Phillips Drug Store, 155 Charles St. at Leverett Circle and from the Arrigo Brothers Pharmacy, 110 Francis St., Boston.
Technique -- Most parents learn to use the feeder at the maternity hospital or at the pediatric hospital; although they felt very clumsy at first and developed sore thumb muscles, they adjusted to it very quickly once at home and relaxed with the baby. Most parents felt that feeding did not pose any great difficulty. Occasionally formula clogs in the tip of the catheter. Also, infants tend to lose some formula through the nose. This is normal for these babies because of the opening from the palate into the floor of the nose; if it seems to disturb the baby a bit, pause in the feeding, comfort the infant, and then continue with less force. Also mothers found it took time and patience to keep formula flowing at a comfortable rate for the baby. Parents did not feel the baby's condition affected the amount he ate.
Position -- Most of our parents found that feeding the baby in an upright position close to the person feeding, or in front of the person feeding, gave eye contact with the baby as well as reduced regurgitation of the formula. Some mothers found that placing the baby in an infant seat was easiest and the upright position tended to reduce the formula going into the nose.
Training others to feed the baby -- Many members stressed that parents need a rest and a break from the feeding and care. Grandparents, friends, relatives, older brothers and sisters, and baby-sitters all fed our babies. Having others realize the simplicity of the feeding eases tensions and lessens fears from them. It also makes them more comfortable with his condition.
This also prepares the baby for the hospital feedings that are given by different people.
Refusal to feed -- If the baby keeps refusing to eat, try to relax and not let the baby pick up our tension. Eventually he will learn and start gaining weight. A common complaint of the mothers is that the babies tend to swallow large amounts of air and have gas pains that interrupt feedings and sleep. Sometimes it is easier to bubble the baby more frequently than you would normally, if you find the baby is gaseous. Some mothers reported that warming the formula a little more than is usual helps to move the bubbles.
Schedule -- The baby with a cleft seems to develop a schedule just as any other baby. Some mothers reported feeding times of 15-20 minutes while others reported times of an hour. Obviously these all affect the schedule; also babies bothered by gas tend to have more trouble sleeping until they outgrow this problem (which fortunately they do!) If the mother is blessed with a colicky baby, the schedule will be erratic for awhile and she can use all the help she can get trying to burp up the bubbles or rock and comfort the baby.
Mothers reported that with this bottle, the person feeding has to experiment with the natural rhythm of the baby's sucking so that intake and swallowing is comfortable for the baby. Mothers indicated that with a young infant, they enlarged the existing cross-cut.
One mother found that the feeding was more successful if the seam of the nipple ran parallel with the infant's mouth.
Mothers of infants with cleft lip only report that the baby has a difficult time "latching on," since the baby uses the lips and gums to create the original suction to stimulate the milk ducts to "let down." It is important to help the baby to "gum" the areola area to stimulate the "let down" and then remain still so the baby can easily maintain suction.
The baby with a cleft palate needs assistance to remain "on" during a feeding. Mothers reported they were most successful in nursing when they supported the breast in the infant's mouth with their thumb and forefinger so that the nipple was fully extended into the infant's mouth without additional vacuum required from the infant. The baby nurses most easily when the breast is full and so stimulating fullness by holding the breast for the infant is helpful.
The baby seems to nurse most successfully on the side where the gum is fullest. Mothers indicated that they would nurse the baby in the "reverse" direction, sometimes called a "football hold" when nursing on the side of the cleft where the baby as "less available gum." Thus, the baby actually nurses with the same side of his mouth on both breasts.
Several mothers found that by sitting upright with several pillows at their back, they could successfully nurse by bringing the baby "straight on" rather than cuddling the baby at the side in the more conventional position.
Several mothers reported that they supplemented with formula or by pumping their own milk when the baby was tired, or when the baby was very young. Most, however, were able to nurse exclusively by the time the baby was several months old.
Most parents felt that the nursing staff was most helpful and understanding of parents' feelings. You might want to inquire at the hospital as to your rights regarding staying with your child. Usually the hospital staff is prepared and willing for you to help in many aspects of your infant's care if you wish.
When you bring your baby home following surgery, the surgeon may instruct you to use the arm restraints for a period of time he specifies. You might also want to attend one of our meetings or speak to a member whose infant has been through these procedures. They can give you suggestions regarding the hospitalization of the baby, other children's reactions, toys that can be adapted for crib play in the hospital, what to bring to the hospital, etc.
Speech -- Naturally you are probably concerned about your baby's ability to speak and develop language. Prescription Parents has some printed information available for parents and maintains a selected bibliography for parents from which other materials are available. Most children born with cleft palate develop excellent speech after surgery and with some speech therapy; however, it requires time and patience sometimes. Some children born with cleft palate require little or no speech therapy and/or secondary surgery; others require some of one or both. Many speech therapists like to talk with parents at least once during the first six months to give the parents an overview of the treatment and suggest specific language and speech stimulation games to play with your infant and young child. To find a qualified speech pathologist, consult the speech and Hearing Department at the hospital where your baby is being treated.
Hearing -- Children born with cleft palate usually develop normal hearing; however, recent studies indicate that from birth and during the pre-school and primary grade years, children born with cleft palate have a tendency to a condition known as otitis media. This is not serious in itself, yet it can have a slight effect on hearing temporarily. The condition occurs when the space behind the ear drum, known as the middle ear space, fills with a sticky fluid. The Eustachian tube which connects the ear to the nose, functions improperly in the child born with a cleft palate and does not adequately drain the middle ear space as it should. As the fluid accumulates in this space, the ear drum does not vibrate properly and thus hearing is diminished. It is most important to understand that this is a temporary condition and disappears with age; however, because the infant is affected at a time when (s)he is developing language, the parent would be well advised to consult an otologist because the condition is treatable. It is also important to note that the parent may not always be aware of the situation since hearing impairment may be slight, yet many otologists and speech therapists feel it is significant enough to impede speech an language development if left untreated. Prescription Parents has additional information in this area written by members of our Medical Advisory Board.
Prescription Parents sincerely wishes you and your baby our very best. We hope that you will want to join Prescription Parents and hope that you may someday want to be active in our group and share your insights about your baby and his care with others.