CLEFT LIP/PALATE
CONTENT
What is a Cleft Lip and/or Palate
What causes a Cleft Lip and Palate
What are the concerns
How is it Treated
What can a Parent Do
Resources
WHAT IS A CLEFT LIP AND/OR PALATE
1.The word “cleft” means an opening or space. In your baby’s case it is an opening or separation (space) of parts of the upper lip, the palate (roof of the mouth) or the gum ridge (where the teeth appear).
2.Cleft lip and/or palate are congenital birth defects—meaning they are present when the baby is born—of the mouth and lip.
a.A child can have a cleft lip, cleft palate, or both
b.A cleft lip and cleft palate together are more common in boys than girls.
3.During the first three (3) months of a pregnancy while the baby is growing and developing in the uterus, the right and left sides of the face fuse (come together) near the middle of the baby’s face.
a.If this fusion (coming together) does not happen correctly, a cleft can occur
b.All clefts are different. They can be different types and sizes; some are more severe than others.
4.A cleft lip can vary in size from a slight notch in the red/pink part of the lip to a complete separation of the lip that continues up into the nose and back through the gums and palate.
a.Unilateral cleft lip is a cleft on either side of the lip. It can be either right or left, and may or may not extend into the nose
b.Bilateral cleft lip is a cleft on both sides of the lip and may or may not continue up into the nose.
(see next page)
Unilateral Cleft LipwithoutUnilateral Cleft Lip with the the nose involved nose involved
Bilateral Cleft Lip with the nose involved
5.A cleft palate happens when the roof of the mouth does not completely close, leaving an opening in the roof of the mouth.
a.It also can vary in size from a very small opening at the back of the palate to a large opening in the roof of the mouth
b.Incomplete cleft palate involves the back half of the roof of the mouth
c.Complete cleft palate involves the whole roof of the mouth.
WHAT CAUSES A CLEFT LIP AND PALATE
1.Clefts are one of the most common congenital birth defects in children; unfortunately the exact cause is unknown.
2.Cleft lip and/or cleft palate can be caused by genes you inherit from both your parents as well as environmental factors.
3.When a combination of factors can cause a condition, it is called “multifactorial”--this means many factors can contribute to the cause.
4.Since genes are involved, the chance of a cleft lip and/or cleft palate happening again in a family is increased, depending on how many people in the family have the condition.
a.For this reason, genetic consultation may be suggested.
5.Most babies with a cleft lip and/or a palate are healthy and have no other birth defects.
WHAT ARE THE CONCERNS
Feeding difficulties
1.The most immediate concern is feeding difficulties and each baby is different.
2.Some babies have problems with gagging, choking or milk coming out through the nose while feeding.
a.Babies with a cleft palate are the babies who will have milk come out through the nose during feedings.
3.Special nipples or other devices can help make feeding easier.
4.Babies with a cleft lip alone usually have the least trouble feeding; BUT the cleft lip can make it difficult for the baby to make a good seal on the nipple and suck properly.
5.Breastfeeding:
a.Breastfeeding is certainly encouraged. It will take a little extra time and patience. If your baby is not able to breastfeed, be open to pumping your breast and feeding your breast milk other ways
b.Babies with a cleft lip alone can usually breastfeed; this may require some changes in breastfeeding techniques.
6.We encourage you to visit your baby often and to feed your baby often.
a.The Occupational Therapist and nursing staff are available to help you learn to feed your baby
b.We encourage you to feed frequently so you will be comfortable feeding your baby before he/she is discharged from the NICU
c.Please don’t hesitate to ask for assistance when you are feeding your baby.
Ear Infections and Hearing Loss
1.Babies with a cleft lip and/or palate are more susceptible to ear infections.
2.Ear infections occur more frequent because the Eustachian Tubes.
3.There are two (2)Eustachian Tubes, one for each ear
a.These tubes do not drain fluid properly from the middle ear into the throat
b.This allows fluid & germs to accumulate in the middle ear and an infection to develop
c.Your child may have special tubes surgically inserted into their eardrums to help drain the fluid and stop some infections.
4.Repeated infections can cause hearing loss.
5.All children with a cleft lip and/or palate should have their ears checked regularly by their doctor.
Speech and Language Delays
1.Children with a cleft lip alone should not have any major problem in learning to talk.
2.On the other hand, children with a cleft palate can have problems with speech.
a.Size of the cleft palate is not an indicator of how serious such problems are likely to be—even a small cleft can affect speech quite seriously
b.Children with a cleft palate may take a little longer than usual to learn to talk.
3.Most children go on to speak normally after the palate is repaired; some children will require speech therapy.
Dental Problems
1.How the teeth are affected depends on the type of cleft your baby has.
a.If the cleft lip or palate extends into the upper gum, which contains the teeth, your baby may have dental problems.
2.Children with a cleft lip and/or palate may have missing, extra, malformed or displaced teeth.
3.Also, babies with a cleft lip and/or palate are more susceptible to dental cavities.
a.Fluoride treatment and regular tooth brushing will be a big help
b.It is important for your child to have regular dental care and to start as early as one year old.
HOW IS IT TREATED
1.There are many people involved in taking care of a baby with a cleft lip and/or palate—a special team often called “a cleft team” or a “craniofacial team.”
2.The Team may include:
a.Neonatologist—a doctor who specializes in the care of sick newborns; he/she will care for your baby while he/she is in the NICU
b.Pediatrician—your baby’s doctor; he/she will follow your child as he/she grows and will help coordinate the multiple specialists involved in your baby’s care
c.Plastic Surgeon—a surgeon specializing in the diagnosis and treatment of skeletal abnormalities of the skull, facial bones and soft tissue; he/she will work closely with the orthodontist and other specialist to coordinate a surgical plan
d.Speech & Language Pathologist—a professional who will evaluate and manage problems with speech and talking; they will closely monitor your child throughout all developmental stages
e.Audiologist—a professional who will evaluate and manage hearing difficulties
f.Pediatric Dentist, Oral surgeon and Orthodontist—these are all dentists with specialized training who will evaluate and manage your child’s dental care; they will coordinate their treatment plan with the other specialists and the surgeon
g.Pediatric Otolaryngologist (Ear, Nose, and Throat Specialist [ENT])—a doctor who will evaluate and manage the ear infections and any hearing loss that may be a side effect
h.Genetic Counselor—a professional who reviews the medical and family history, as well as examining your child, to help make a diagnosis; they also counsel families regarding the risks for recurrence in future pregnancies
i.Child Psychologist—a professional who will help your child and your family deal with the social and emotional feelings of having cleft lip and/or palate
j.Social Worker—a professional who will provide guidance and assistance with community resources and referrals; they may also serve as the Team Coordinator
k.Nurse Coordinator—a registered nurse who acts as a liaison between your family and the Team of specialists. They can help you work your way through meetings, multiple appointments, transportation needs; sometimes the coordinator is also the Social Worker.
3.Each person on the team has a special skill that your baby needs.
a.They evaluate your child regularly and his/her progress
b.They will examine your child’s hearing, speech, nutrition, teeth and emotional state
c.They will share their findings with each other and you, then make recommendations about how best to treat your baby.
4.They will also meet with you to help with any concerns related to feeding, social problems, and speech. They will provide you with information and resources to help with your child’s growth and treatments.
5.Surgery is usually performed during the 1st 12-18 months of age to repair a cleft lip and/or cleft palate.
a.Both types of surgery are done in the hospital and your baby will be put to sleep for the surgery.
6.A cleft lip is usually repaired 1st and may only take one surgery, especially if the cleft is unilateral (a cleft on one side of the lip).
a.Bilateral cleft lips (a cleft on both sides of the lip) may be repaired in 2 surgeries about a month apart and may require a short hospital stay
b.The surgeon doing the procedure(s) will talk with you about what is best for your baby.
7.The cleft palate is repaired last. It is important, however, to have the cleft palate closed before your child reaches 18 months of age; it is during this time that speech is developed.
a.Waiting too long to close off the nose from the mouth may make it difficult for your child to make certain sounds properly and interfere with his/her speech
b.This surgery may require 2-3 nights in the hospital
c.Again, the surgeon doing the procedure will talk with you about what is best for your baby.
8.Any other needed surgeries are patient-specific and depend on the severity of the cleft and /or its shape.
9.It is important for you to keep your baby’s appointments with the specialists and learn what’s the best plan of care for your baby.
WHAT CAN A PARENT DO
- An important part of the baby getting better is the parents’ love and concern.
- Your love and attention will go a long way in helping your little one on the road to recovery.
- We encourage you to visit often and especially during feeding times so you can become comfortable in feeding your baby.
4.Keep up with your baby’s progress each time you visit or call.
a.If you are unable to visit, please call frequently and check on your baby.
5.Take care of yourself and get plenty of rest.
a.If you get sick, have a fever, a cold or cough, you may want to stay at home and visit when you are feeling better
b.In this case, please call us and check on your baby.
RESOURCES
Cleft Palate Foundation/American Cleft Palate-Craniofacial Association
1504 East Franklin Street, Suite 102
Chapel Hill, NC27514-2820
State: 919-933-9044
National: (800) 242-5338
The Cleft Palate Foundation is a non-profit organization dedicated to improving the quality of life of people affected by facial birth defects. For information and support call one of the numbers listed above or contact them on the Web at:
Kids Health for Parents:
Parent information. You may contact them on the Web at:
March of Dimes
The March of Dimes is dedicated to preventing birth defects. You may contact them on the Web at:
Reviewed/Revised: 11/06…..06/13
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