Fig ° 1

Fig °1.1

Fig ° 2

Fig °3

Fig °4

Fig °4.1

Fig °4.2

Fig °4.3

Fig °4.4

Fig °4.5

Fig °4.6

Fig °4.65

Fig °4.7

Fig °4.8

Fig °4.9

Fig °5

Fig °6

Fig °7

Introduction: During very early pregnancy, when the human skull is forming, the left and right areas of the face are separate parts. They should fuse together to become one by the twelfth week of gestation. The fusion should form the nose, lips and mouth. Sometimes, the jaw, palate, and/or other bony areas do not fuse together completely and these areas remain split, or cleft.
Some babies are born with a single cleft while others have multiple clefts - which is NOT uncommon.  Most common clefts effect the lips, roof of the mouth (in the hard palate ((pal-et)) at the front or the soft palate near the back) jaw, and nasal septum. If a cleft lip is present, it can be unilateral (one-side) or bilateral (two-sides. ) (1)   In some instances, a child is born with a complete facial cleft.  (1.1) Surgical intervention is usually necessary to align and join the bony parts, but always necessary to correct the tissue areas. Persons born with a cleft often face other conditions associated with the anomaly.  Information on this associated matter can be found under 'Related Conditions.'
Medical Professionals do not know the cause of clefts; which effects an average of 1 in 600 births. There is clinical evidence that it happens to boys more so than girls. Some professionals believe that persons born with a cleft may have (up to) a 32% chance of conceiving children with clefts. Women often give birth to a child with a cleft in the middle of other healthy births. Sometimes women will birth multiple children with clefts. Clefts are usually random and while the cleft may at times be seen by (2) OB Ultrasound, there is currently no in-utero corrective surgery. Many doctors believe that clefts may be caused by environmental and/or genetic problems. Therefore, genetic consultation is often suggested. Doctors often explain to new parents, that even the most 'unique' lifestyle has no bearing on whether a child is born with a Craniofacial Anomaly.  Fact is, that aside from eating healthy, exercising regularly, and to abide by your physicians prenatal vitamin instruction, there are no specific precautions and parents should not feel guilty.
- TOP -

Related Conditions: There are several disorders and illnesses that may accompany a cleft lip and palate. While periods of illness occur in the most healthy of children, some illnesses are reoccurring or on-going for the child born with a cleft. Prevalent illnesses are not limited to: ear infection, sinus inflammation, asthma, Sleep Apnea, Reflux, toothaches, clogged tear ducts, throat infection, Sensory Oral Dysphagia, and severe bloating/gas due to the inability to suck properly; thus causing pain in the abdomen.

Below is a list of related conditions, its' SHORT description, and a linked URL for your convenience:
Adams-Oliver Syndrome: A rare syndrome of defects of the scalp and cranium associated with distal limb anomalies and occasional mental retardation.
Aplasia Cutis Congenita: A rare disorder with absence of certain layer(s) of skin, most often on the scalp, but also on the trunk, and/or arms and legs. The affected area is typically covered with a thin, transparent membrane. The skull and/or underlying areas may be visible and be abnormally developed.
Apert Syndrome: A condition involving distortions of the head and face and webbing of the hands and feet.
Arhinia: The congenital absence of the external nose, nasal cavities, and olfactory apparatus.
Beckwith-Wiedemann: A very rare condition that is associated with a large body size and/or organ size.
Charge Syndrome: An extremely rare and extremely complex birth anomaly disorder effecting multiple organs.
Crouzon Syndrome: This anomaly is characteristic of skull fusion abnormality. Also, see Apert Syndrome.
DiGeorge Syndrome: aka Catch22. A degenerative anomaly by chromosome defect. Effects different parts of the body.
Freeman-Sheldon Syndrome: aka The Whistling Face Syndrome
Hemangioma: Abnormally dense collections of dilated small blood vessels that may occur in the skin or internal organs.
Hemifacial Microsomia: A condition in which the lower half of one side of the face (e.g. unformed or missing ear) does not grow normally.
Melnick-Fraser Syndrome: A very rare genetic disorder characterized by distinctive malformations of the head and facial area, with skin lesions and abnormalities of the eyes.
Micrognathia: A condition in which a person is born with a small lower jaw or an under bite.
Microtia: A genetic disorder characterized by the deformation or missing ear.
Moebius Syndrome: A genetic disorder thought to be caused by underdevelopment of facial nerves.
Nager Syndrome: A rare genetic condition effecting malformation of the skull, face and upper extremities.
Pierre Robin Syndrome: A birth anomaly that is characterized by a very small lower jaw (micrognathia). The tongue tends to fall back and downward (glossoptosis) and there is cleft soft palate.
Sensory Oral Dysphagia: A genetic disorder making a person physically incapable of swallowing or chewing textured foods of any kind.
Stickler Syndrome: A connective tissue disorder, a genetic malfunction in the tissue that connects bones, heart, eyes, and ears.
Treacher Collins Syndrome: A birth anomaly that has several characteristic features including underdeveloped cheek and jaw bones, misshapen or missing ears and down slanting eyes.
Van der Woude Syndrome: An inherited genetic disorder (common with cleft lip and palate) causing mounds or pits to form on the lips.
Velo-cardio-facial Syndrome: The most common anomaly associated with cleft palate.
- TOP -

Ent / Speech / Dental: Beyond the cosmetic differences, there are other possible physical complications that are commonly associated with cleft lip and cleft palate.
Children born with clefts have a higher incidence of ear infections and hearing problems. Ear infections are often due to a dysfunction of the Eustachian (you-stay-shaun) tube that connects the middle ear to the nose and throat. It normally opens and shuts to relieve pressure that builds up behind the ear drum. This tubes' main function is to naturally cleanse, or drain fluid from the middle ear. (3) Often, the unusual muscle structure of a cleft prevents the Eustachian tube from opening and draining properly. This causes buildup and bacteria to grow, which leads to reoccurring ear infections. Infections can be quite painful and if left untreated, can cause permanent hearing loss. It's recommended that children born with clefts have a hearing test within the first week of life and follow-up with periodic tests throughout the first 4 years of life. A Tympanostomy (tim-pan-oss-toe-mee) tube can be placed in the canal to help drain the middle ear. Further information on this tube and it's surgical implantation can be found under the 'Surgery' area.
Due to the opening of the roof of the mouth and the lip, muscle function may be decreased, which can lead to a delay in speech or abnormal speech. The roof of the mouth directs sound from the vocal cords out toward the open lips. If the palate is cleft, sound may be directed to the nose instead. A person with a cleft may sound nasal or hard to understand.
Speech therapy can not only help strengthen structural muscles, but it can also help promote the formation sounds that are understood by others. While schedules vary, speech therapy is usually initiated when the child is 1 - 2 years of age. Some children born with cleft palate may have other abnormalities within the throat and mouth. An example of secondary abnormality  is uvular dysplasia (having multiple or a separated uvula), which is correctable with surgery. This type of surgery is usually performed at the time of having the pharyngeal flap procedure. Approximately 20-30 percent of cleft palate patients will have velopharyngeal incompetence or hyper nasal speech after surgery, and require the pharyngeal flap procedure to correct it. This procedure is further discussed in the 'Surgery' area.
The cleft palate usually interferes with jaw growth (both in womb and after birth) and development. As a result, teeth do not erupt normally and extensive orthodontic treatment is usually required. It is common for children with cleft palate to have teeth erupt in unusual positions (e.g. in a vertical row, mid-palate), erupt crooked or not erupt at all. This abnormal eruption does not only have an affect on facial appearance, it also has a direct effect on the child's eating, chewing and speech. If the cleft palate is 'complete' (extending into the nose and gum line) a bone graft (Orthognathic surgery) is required at a later age, to 'fill-in' the missing portion of the gum line, jaw and maxilla bone. In the interim of having the bone graft procedure, a palatal expansion device (prosthesis palate) may be required. This device is used to ensure proper eating and chewing abilities; and aide further alignment of the dental arches. Persons born with cleft palate usually benefit from the use of such devices and wearing orthodontic braces, however, a large number of them will require reconstructive jaw surgery because the deficiency is too great for orthodontic compensation alone.
- TOP -

Coping: If you've just found out that your child has an anomaly, you're probably experiencing many emotions. This may include feelings of confusion, guilt, excitement, anxiety and sense of loss. Relationships may be strained and there is sometimes, even blaming of various family members. Parents in this situation often say that they feel overwhelmed and uncertain they will be able to provide the child with proper nourishment and overall care. Other issues of concern for new parents may relate to accessing professional and community services, securing adequate finances and medical coverage and coping with the stress of sending a child to numerous surgeries. Fortunately, you aren't alone - with little effort, you'll find that there are a lot of people here and resources to help you.

Acknowledge your emotions and be well rested whenever possible. Parenting a child with genetic anomalies requires additional patience, understanding, education and performing necessary home care tasks. Parents of children with birth defects experience shock, denial, grief, anger and sometimes envy parents with 'normal healthy' children. It's important to acknowledge your feelings and to give yourself permission to mourn the loss of the healthy child you thought you'd have. Talk about your feelings with your spouse or partner and with other family members. You might also consider seeing a counselor.
One of the best things you can do for yourself and your child is to seek support and education. Getting in touch with someone who's been through the same thing can be so helpful; there will be no confusion of whether they truly understand and they can be of great help in the interim of speaking with your child's physician. Having a repor with someone who has already been in your situation, also allows you to learn and prepare for the future, through their experience. Many years ago, the percentage of babies born with craniofacial anomalies was much lower, and parents didn't have the resources (internet, phone, advocacy organizations) that are readily available today; they had to learn by trial and error. By visiting this web site, you've already taken the first step to understanding what effects 'living with a craniofacial anomaly' will have on you and your baby.
Pending the severity of your child's anomaly, you may feel overwhelmed and extremely sad when the physician explains the forecast of your child's surgeries and treatment. No parent likes the idea of their child undergoing anesthesia, surgery and feeling postoperative pain, but with early intervention, asking questions and being the best prepared possible; you will look back in a year or two and wonder why you had such elaborate concerns. You will make it through the hard times and your child will too. Children are strong and much more resilient than we tend to think. You will be amazed at your child's courage and how he/she post-operatively bounces back to their daily routine.
Celebrate the birth and life of your new baby! He/she will need the same cuddling, warmth, diaper changes, and love that every baby does. Parents often wonder if they should send birth announcements or have newborn photo taken. Sending announcements for any birth is a personal preference, but by all means, treat this birth as you would other births. Just because your baby has an anomaly doesn't make the birth or baby something of shame or embarrassment. This baby will bring you all the joy and rewards that all babies bring to their parents.
- TOP -

Social: It's going to happen...someone, whether friend or stranger is going to ask you about your child's face. What you tell them is your decision. How you tell them can have a profound effect on them as well as on your child. Most parents of special health children will tell you that they have had both good and bad experiences, when explaining their child's anomalies to others. Try not focusing on how bad the situation is, or how far your child has to go, but rather focus on your child's strength, courage and how far they've come. Focus on his/her milestones, or favorite cartoon character. Focusing on something other than the anomaly itself will help the person understand, that while your child has facial differences, he/she is 'just like any other child.' Some parents believe it's most beneficial to refer to 'the child' and not 'the cleft.' To be more specific, when discussing their child, many parents make a conscious effort in saying 'Susie/Bobby was born with a cleft.' instead of saying 'Susie/Bobby is a cleft baby.'
Your child is also going to look onto you for strength and courage. When your child hears how proud you are of them, or senses that you're not dwelling on the past or overly concerned about the future, it'll make them feel 'just like any other child.' After all, aren't they?
Some parents find themselves feeling defensive toward others when a person is seeing their child for the first time. It's hard to know ahead of time how the person will react; some ask questions, some are speechless, some may surprise you and already know a person born with a cleft. Try taking the situation from the approach of trying to make them comfortable in asking questions, to understand that your child is like any other and will need love and care. In the event that this person is a loved one, or relative; remember that they too, more than likely had expectations of your having a healthy child and may feel as if they don't know right words, right questions, or may fear offending you or going beyond set boundaries.
Parents often admit that there are some people, that, no matter how approached, will not or can not handle discussing the child's health issues. (e.g. grandparents or adult siblings) Everyone absorbs information in their own way and in their own time. While this may seem unimportant, it very well can be if the person is someone who routinely interfaces with your child or someone who is close to the child's immediate family. If a child is witness, or raised to believe that secrecy or denial is acceptable, how can they be expected to accept themselves or have healthy self-esteem? How can they be expected to NOT feel 'different, abnormal, weird', etc?
Try recommending to this person, a book, a telephone support system, or recommend their visiting MiCleft.org or cleftAdvocate.org. If they aren't the type to take interest in those examples, how about inviting them to 'come along' to a doctor appointment, or perhaps participating in a lunch date or playgroup where other special health parents and children are present?
You may also find yourself on the complete opposite end of the spectrum. Some friends will find it hard talking about anything but 'the cleft.' Whether this person is trying to cope with their insecurities, inexperience, showing true curiosity, or just likes to talk a lot, try sitting down with them and explain that while you appreciate their interest in your child, that you feel that there are so many conversations to be enjoyed. Conversations that have absolutely nothing to do with your child's anomalies. In the event that you spend a great deal of time with this person, perhaps setting a specific amount of time for asking/answering questions would be helpful.
Others may offer personal support. The offer could be in the way of caring for the child so that you can take a nap, or run errands. It may be making dinner for your family. It could be caring for your older children while you're at a doctor's appointment. Whether large or small, decide what you're comfortable with and allow others to help. This will not only relieve you of the task, stress, and so forth that this person is helping you with, but it will also allow your child to interact with someone other than you. How often and at what quality they socialize with others, will not only have a great effect on their self esteem, but it will better prepare them for school and later years when you are no longer speaking for them. It's most unfortunate, but in time, your child will realize that he/she has facial differences.
While the initial concerns still exist, the parent's concerns will 'shift gears' as the child grows through adolescence and into their teen years. Most parents find themselves concerned about teasing, peer acceptance, speech difficulties, facial appearance and behavioral problems. At this stage, your child understands what's involved and they will be aware of their social surroundings.
The child should be allowed to speak (and be acknowledged) about their feelings, preference of surgeries, social problems, personal issues, etc whether at home or during medical appointments. Furthermore, once a child becomes an older teen, their preference of whether or not (e.g.) they have a lip revision or jaw surgery should be respected. As with any child, the parent should try their best to make the child feel accepted, loved and protected; but it is important for the child to have the knowledge necessary to discuss their anomalies comfortably with whomever they choose.
- TOP -

Feeding: The most immediate concern for a baby with a cleft is good nutrition.
Children with just a cleft lip do not routinely have feeding difficulties. Parents of infants with a cleft lip usually find the 'perfect technique' after a little practice and allowing adequate time for adjustments. Children with a cleft lip are usually able to use the nipples and bottles sold in most retail stores. If your child has a cleft lip and still shows great difficulty, be rest assured, there are many bottles made specifically for infants with cleft lip and palate.
An infant with a cleft palate will require specific nipples and a special feeding technique, especially when breastfeeding is involved. Suckling for children with a cleft palate is difficult because of the poorly formed roof of the mouth.
The purpose of the palate is to separate the mouth from the nose. The muscle itself, the soft palate, normally moves upward to close off the air passage to the nose when swallowing. This movement creates a closed system that enables sucking, thus creating pressure, pulling the milk from the breast or bottle. A cleft palate cannot form the closed system and sucking does not occur. The child may instinctively move their mouth as if they are sucking, but they will in actuality be using up precious calories in the attempt to feed them self. This action will physically exhaust them and even with numerous attempts, consumption will not occur. Feeding an infant with a cleft takes patience and a lot of practice. Lack of knowledge of these facts can lead to failure to thrive.
Position the infant in an upright position with the head tilted back at a 30 degree angle. This position helps the milk to flow down and into the throat and less into the septum. While each child is different, you may try placing the nipple in a position toward the non-cleft side of their mouth. Some infants learn to use their non-cleft gum line to pull milk from the nipple. Infants with clefts do swallow much air and will need to be burped frequently while eating. The time to feed a newborn with a cleft varies, but in the beginning (learning stage) it usually ranges from 40 minutes to 1.5 hours for each 4oz feeding. It is most important to feed the infant before they are extremely hungry and while they are well rested; eating takes a lot of energy!
With practice, comes successful technique. With technique comes easier feeding. In no time, you and your baby will enjoy each feeding experience and he/she will be a professional. Outside of the post surgical periods, infants are usually able to drink a 6oz bottle and eat a jar of baby food within 20 minutes!
The thought of introducing your child to jarred baby food may be very overwhelming and worrisome. Some parents fear that the baby will choke, have food coming from it's nose and eyes, or worry that having a spoon in the child's mouth causes discomfort. Again, you are not alone. Feeding baby food to your child will also take practice. Most children have temporary problems making this transition. It isn't unusual for a small amount of food to ooze out of your child's nose, especially if they sneeze during their feeding. This does NOT hurt the child. Try to remain calm and softly wipe the food from their nose and upper lip. There will be times when 'oozing food' is more frustrating. For example, when the child has a cold, is upset and/or crying, or when facial tape is in place. It may be necessary to reapply tape after each feeding, but again, this will get better with time and practice.
Most will tell you that breastfeeding a baby with a cleft is impossible; this is not completely true. It does, however, involve an abundance of patience, time, practice and determination. Don't get discouraged when your baby does not 'latch' onto your breast properly. Understand that even with the most practice, most babies with cleft palate cannot physically meet this 'challenge.' Furthermore, very few babies with cleft palate are able to express adequate amounts of milk from their mother's breast without aide of modern intervention. There are different systems available that are made specifically for breastfeeding preemies and babies with cleft palates. Keep in mind that while breastfeeding is your first choice, most babies with clefts are not capable of eating this way. Don't be ashamed or afraid to try breastfeeding systems. Be patient and try different things. Remember that your baby can also receive the same expressed milk by bottle; this is the end result of most mothers attempts at breastfeeding a child with a cleft. Whether you choose breast, pump or formula, make it an enjoyable event for you and your baby.
There are several breastfeeding systems, bottles and nipples to try. You may be lucky with the first or you may have to try many. There are many feeding items to choose from, but below is a list of commonly used name brands. We encourage you to view our 'Links' area as we will periodically list sales, promotions and local resources associated with feeding essentials. Further information of these and other products may be available at: www.cleftadvocate.org/feeders.html

- TOP -

Home Care: Aside from using your child's preferred feeding utensils and actual feeding techniques, there are other daily/routine home care procedures that may be required. There will also be pre-surgical tasks that will need to be done at home (usually on a daily basis) pending the procedure/surgery schedule set forth by your child's surgical team. Below are most common home care tasks associated with having a child with cleft lip and palate:

- TOP -

Procedures: The overall goal is to fix the roof of the mouth so that your child can eat and learn to talk normally. However, this does NOT mean that your child's mouth will be sufficient to live a productive life after one surgery or after undergoing the palate surgery alone. There are many organs and craniofacial (bones and structures) greatly affected by the cleft presence alone. Pending each area's role in the anomaly, your child will have to undergo specific technique, for each, individual organ/bone corrective surgery.
Treatment for these anomalies most often include, numerous surgeries and a complete team approach to help with the multiple complications that can occur. Specific treatment will be determined by your child's physician based on: your child's age, overall health and medical history; specific ratio of your child's anomalies; your child's tolerance and allergy to specific medications, procedures or therapies; involvement of other body parts or systems affected by the anomalies; and you and your child's preference.
Additional surgery is necessary for children born with secondary clefts and abnormalities, but below is a list of surgeries associated with the 'usual' cleft lip and cleft palate combination.

- TOP -

Post-op Care: Be sure to check with your/your child's physician and hospital nurse as the following is only a guideline and each child's situation and doctor opinion varies:

- TOP -

Child (day) Care: Let's face facts: Some parents are able to provide for their family by means of one income but most are not. In this day and age, a high percentage of infants and children are enrolled in a daycare or latchkey program of some kind. Working parents of a child with a cleft are most concerned whether their child will get adequate care while in the hands of another adult, and if they'll be able to afford it. They worry that their child may have feeding issues, will not be socially accepted, or that the care facility will not have sufficient staff in place to care for the child in the event of an emergency or dealing with home care procedures. As a parent, whether your child has a cleft or not, research is key. When looking into a specific facility or in-home care environment, be very conscious of how the staff communicates with the children in their care. If possible, try visiting during their busiest time or snack/lunch period. Talking to the staff member that would/will be directly responsible for your child's care is crucial. Explain your child's situation and allow questions to be asked. We've listed a few important questions to ask a potential daycare provider:

- TOP -

Insurance: It's most unfortunate, but at this time, the State of Michigan is NOT mandated in covering cleft lip, cleft palate, and many other birth defects of the face/skull. What does that mean? In a short, round-about explanation, it means: If your child has a cleft, your health insurance company is not mandated to cover certain dental, surgical, therapy, and other treatment necessary for your child to live a 'normal' productive life. It also means that your child's medical treatment may be rejected and go unapproved without getting your child's primary care physician, surgical team, social case worker, hospital administration, dentist, etc involved. You may also possibly have to get your employer, human resource director and attorney involved to protest and appeal your insurance company's denial of medical coverage.
Therefore, it is important to know your commercial (employer provided) health care insurance policy inside and out.  Yes, it's a lot to read and absorb, but it is vital to getting what you want...and what your child needs.
Pay careful attention to the section titled Exclusions. Be careful not to assume that just because you see your child's upcoming procedure listed there that you'll never receive an approval. Two of the most common problems in interpreting the Evidence of Coverage are: exclusions for dental conditions and cosmetic procedures.
If you've read your policy of coverage and are more worried than ever, don't lose hope! Like so many other states, Michigan has insurance coverage plans that cater to children like yours. Perhaps you're unable to finance extra insurance? Perhaps your employer offers insurance but it's catered around the casual needs of a 'normal healthy child?' Perhaps you do not have health insurance? Or perhaps you believe you have adequate coverage but you'd like to purchase additional coverage 'just in case.' While we cannot fill out applications and meet the appropriate representatives for you, we can point you in the right direction for doing so yourself. We encourage our visitors and participants to view the 'Resources' page within this site. There you will find state funded programs and local resources to finding the coverage that your child so needs.
Lastly ...Hopefully, you will never have to...But if you find yourself in the tough position of requiring care for your child in the face of an insurance denial, cleftAdvocate has important and helpful information for you! Examples of ways that cleftAdvocate provides help is not limited to: understanding your policy, getting the most out of coverage, important factors that most aren't aware of, and most useful are cleftAdvocate's documentation library of the denial and appeal process.
- TOP -

Surgeons: Whether you're welcoming a newborn with a cleft into your heart and home, if you've adopted a child with a cleft (that perhaps need surgeries initiated or revisions) or if your child was born with clefts; the most important thing (as with any child) is finding the best doctors. Doctors best suited for his/her needs; that make him/her most comfortable; that has his/her best interests at heart; that has adequate and appropriate staff; and most importantly, has vast experience in necessary care, treatment and surgical techniques of craniofacial anomalies.
While it can be overwhelming to most, below is a general list of professionals that are most often associated in the care of a person afflicted with craniofacial anomalies:

If you find yourself wondering how the typical parent might find time to research or determine whether a particular surgeon and/or surgical team has the knowledge and experience best suited for your child, you may find the following most helpful. Parameters for Evaluation and Treatment of Patients with Cleft Lip/Palate or Other Craniofacial Anomalies document summarizes the current guidelines for team care endorsed by the ACPA (American Cleft Palate-Craniofacial Association). By adhering to these guidelines, teams are promoting the best possible outcome for children born with clefts or other craniofacial birth defects.
Furthermore, if you'd like to know if a specific physician is an active and qualified member of the ACPA, you can call the 24/7 hotline at 1-800-24-CLEFT .
MiCleft strictly prohibits publicized physician referrals within the bounds of this web site. What we do offer, however, are free services that enable you to communicate with others in your area. We encourage you to become acquainted with the many site participants that may have experience or opinion of a particular doctor in your area. 'Word of mouth' is often the best approach to empowering yourself...so Network Now! After all, this is what MiCleft is for; support, education, resources and providing the essential keys to improving your/your child's health and happiness.
- TOP -

This 'Overview' area is just a portion of the information available on-line.
We encourage our visitors and participants to visit AmeriFace.org for detailed information.

We subscribe to the HONcode principles of The Health On Net Foundation