Cleft FAQ by 4G8v4q8

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									Cleft FAQ
                   CONTENTS
   What is cleft lip and palate?
   What causes cleft lip and/or palate?
   How common is cleft lip and/or palate?
   What is the treatment for cleft lip and/or palate?
   What other operations may be necessary?
   What other kinds of problems could my child with
    cleft lip and/or palate have?

   Will this happen to children I have in the future?

   Our Treatment Approach in AIMS Kochi
   How to Contact us

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         What is cleft lip and palate?
    Cleft means ―split‖ or ―separation‖. During early
    pregnancy separate areas of the face develop
    individually and then join together. If some parts do
    not join properly the result is a cleft, the type and
    severity of which can vary

   Cleft lip (split of the upper lip) and
   Cleft palate (split of the roof of the mouth)
    are the most common types of congenital (birth)
    defects. Because the lip and the palate develop
    separately, it is possible for the child to have a cleft
    lip, a cleft palate, or both cleft lip and cleft palate
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                        Cleft lip:

   A cleft lip is a condition that creates an opening in the
    upper lip between the mouth and nose. It looks as
    though there is a split in the lip. It can range from a
    slight notch in the coloured portion of the lip to
    complete separation in one or both sides of the lip
    extending up and into the nose. A cleft on one side is
    called a unilateral cleft lip. If a cleft occurs on both
    sides it is called a bilateral cleft lip. A cleft in the
    gum (alveolus)may occur in association with a cleft
    lip. This may range from a small notch in the gum to
    a complete division of the gum into separate parts.

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                      Cleft palate:
   A cleft palate occurs when the roof of the mouth has not joined
    completely. Cleft palates can be unilateral or bilateral. The
    back of the palate (towards the throat) is called the soft palate
    and the front (towards the mouth) is known as the hard palate.
    If you feel the inside of your mouth with your tongue, you will
    be able to notice the difference between the soft and the hard
    palate.
   A cleft palate can range from just an opening at the back of the
    soft palate to a nearly complete separation of the roof of the
    mouth (soft and hard palate). Sometimes a baby with a cleft
    palate may have a small lower jaw (or mandible), and a few
    babies with this combination may have difficulties with
    breathing easily. This condition may be called Pierre Robin
    Sequence.

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What causes cleft lip and/or palate?

   . The exact cause of the condition is unknown.
    The majority of clefts appear to be due to a
    combination of genetics and environmental
    factors




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     How common is cleft lip and/or
              palate?
   Cleft lip and cleft palate is the commonest
    congenital anomaly of the craniofacial region
    One of every 800 newborns is affected by
    cleft lip and/or cleft palate.
   There are 32,000 to 35,000 NEW babies born
    with cleft deformities EVERY YEAR IN
    INDIA


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    What is the treatment for cleft lip
             and/or palate?
   A child born with a cleft frequently requires several different types of
    services, including surgery, dental/orthodontic care and speech therapy, all
    of which need to be provided in a coordinated manner over a period of
    years
   .(TREATMENT PROTOCOL for cleft lip/palate)

   A cleft lip is usually surgically repaired at 2–3 months and the palate at 9-
    18 months. Generally, surgery requires a general anaesthetic and takes 1-2
    hours. The surgeon rearranges the skin and muscles of the lip or the tissues
    of the palate so no skin grafting from other parts of the body is needed.

   Most babies recover very quickly and will not experience much pain after
    this operation. Medication is given for any discomfort. The hospital stay is
    usually one week.



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        What other operations may be
                necessary?
   Minor improvements to the lip or nose may sometimes be
    required.(Secondary lip/palate surgery) It is recommended
    that any such surgery take place before the child starts school,
    typically at 4-6 years of age. An alveolar (gum line) bone
    graft may be necessary at 7-11 years depending on the type of
    cleft.
   A few children may require an extra
    operation(pharyngoplasty) to improve speech by reducing the
    amount of air escaping through the nose. This is usually
    performed early in childhood (3-4 years) when necessary.
   Other surgery(osteotomy /orthognathic surgery) to help the
    top and bottom jaw meet in the best position may occasionally
    be necessary. This is carried out when a child has reached his or
    her full growth at about 15-18 years of age.
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    What other kinds of problems could
    my child with cleft lip and/or palate
                   have?
    In addition to the physical characteristics common to
    clefts, your child may have the following problems:
   Problems in feeding
   Dental development — teeth in the area of the cleft
    may be missing or improperly positioned.
   Speech difficulties — cleft lip does not usually result
    in speech problems; however, often children with
    cleft palates benefit greatly from early speech
    therapy.
   Increased frequency of middle ear infections are
    possible with cleft palate.
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    Will this happen to children I have
               in the future?

   Cleft lip, with or without cleft palate, can run
    in families. However, in most cases the cause
    is unknown with approximately a 4% chance
    of a subsequent child being affected. A
    medical genetics evaluation is available at our
    centre in AIMS and will provide specific
    information.

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    Our Treatment Approach in AIMS
                Kochi
   In AIMS ,CLEFT LIP AND PALATE CENTRE ,Department of Head
    and Neck surgery, we offer a comprehensive approach to treating the
    child that should start as soon as the child is born. Our specialists are
    available for consultation with the child’s family even before they take
    their baby home from the hospital.
   Ongoing care typically includes treatment planning, genetic counseling,
    feeding consultation, surgery, speech and language therapy and psychology
    services, if needed.
   Presurgical orthopaedic devices may be recommended in selected cases to
    help narrow the cleft prior to repair, as well as to mold the child’s lip and
    nose. This can result in an improved surgical outcome. Orthopaedic
    appliances can also improve the child’s sucking and eating abilities while
    awaiting surgery.
   Cleft lip and nose repair typically takes place at 3 months of age, with cleft
    palate closure occurring between 9 and 12 months in anticipation of speech
    and language development.

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        APPROXIMATE
    TREATEMENT SEQUENCE
   Pre surgical orthopaedics
   Primary lip repair at 3 month
   Primary palate (palatoplasty)repair at 18 months
   Speech therapy
   Secondary lip/palate repair
   Cleft orthodontics
   pharyngoplasty
   Secondary alveolar bone grafting
   Cleft osteotomy / distraction
   Cleft rhinoplasty
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                           Cleft lip


           unilateral                           bilateral



complete                             complete

                        incomplete                    incomplete



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      Unilateral cleft Lip
complete                     incomplete




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              Bilateral cleft lip
            Complete                Incomplete
pediatric               adult




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                                             complete Cleft of

Submucous cleft
                          Cleft palate      soft and part of
                                            hard palate




                                           Cleft of the alveolus,hard
  Cleft of soft palate                     and soft palate




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Cleft lip and palate




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What can surgery do ?




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Palatoplasty(surgical repair of
           palate)
 Before surgery                 2 months after palatoplasty




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             Alveolar bone grafting
Before grafting                 3 months after grafting with the
                                tooth erupting through the graft




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Secondary lip repair




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CLEFT RHINOPLASTY
Before surgery                     After Rhinoplasty




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    Feeding in cleft palate children
   Breast feeding
   Bottle feeding
   Progression to solid foods




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                        BREAST FEEDING IN CLEFT BABIES
Breast feeding the infant with a cleft will depend on such factors as growth, nutritional needs, and the severity and
placement of the cleft. Generally, babies with a mild cleft lip or mild cleft of the soft palate are those who have the
most success with breast feeding. Until your baby's cleft lip is repaired, try gently holding the upper lip together
while breast feeding to help create the needed suction. The human breast can also "mold" to fill the space of an
incomplete cleft. Expressing (massaging out) a little milk before a feeding will start the flow of milk. This sometimes
helps keep the baby interested and more willing to work at the initial sucks without frustration. Bigger and wider
cleft palates create a greater challenge for babies.
Experiment with your baby to find good positions for the both of you during breast feeding. Any position you choose
should be as nearly upright as possible. When the baby's head is upright gravity helps pull liquid into the
throat and stomach, rather than into the nose or ear canals. Keeping milk from the ear canals is important
because babies with clefts are at higher risk for ear infections. The child with cleft lip and/or palate allows extra air
to be swallowed. Therefore burping the infant regularly is important because the extra air in the stomach takes
up space that could be filled with food and increases the chances of spitting up after a feeding.
Breast feeding a baby with a cleft lip and/or palate can take two to three times longer than other babies because their suck
may be slower. Try not to get frustrated, but accept it as a natural part of your feeding time. Try breast feeding more
frequently for a shorter period of time, as the baby will use up too many calories with the long process and get
tired.
Getting milk "letdown" is difficult if the baby's suck is weak. If your milk production has decreased, you can
stimulate your breasts to help maintain milk supply. A breast pump will help stimulate your breasts to increase your
milk production. Expressed milk can be stored in a clean container and kept safely in a refrigerator for 24 hours
and in a freezer for 2 to 3 weeks.
You should be able to breast feed your baby up to several hours before surgery. Discuss this and when it will be all
right to begin breast feeding again after surgery with your surgeon.



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           BOTTLE FEEDING IN CLEFT BABIES
Bottle Feeding is another option available for the infant with a cleft. However, a cleft lip can cause an air leak around the infant's
seal on the nipple, preventing adequate suction. When buying a baby bottle, the most important thing to look for is the softness of
the plastic. Soft plastic bottles allow the feeder to squeeze slightly and help control the flow of liquid. Pulsating of the bottle should
be done in rhythm with the baby's sucking. The Mead Johnson Company has developed a Cleft Palate Nurser bottle and nipple set
that includes a comfortable soft plastic bottle and a soft nipple with a cross-cut end. There are many different types of nipples out on
the market. An effective nipple is usually soft and has a cross cut or several extra holes. Preemie nipples or regular juice cross-cut
nipples work for some infants. Nuk nipples are also effective and may be used with the opening in the nipple facing up
toward the palate or facing down toward the tongue.
The Haberman Feeder has been designed especially for babies with cleft palates. This bottle has a specially designed
nipple that keeps liquid in the nipple once the nipple has been sucked. It has a slice-cut hole that responds to the typical
chewing action of these infants.
Any position you choose should be as upright as possible. When the baby's head is upright, gravity pulls liquid into
the throat and stomach rather than into the nose or ear canals. Keeping milk from the ear canals is important because
babies with clefts are at higher risk for ear infections. The child with cleft lip and/or palate allows extra air to be
swallowed. Burping is just as important in bottle feeding because the extra air in the stomach takes up space that
could be filled with food and increases the chances of spitting up after a feeding. All of these factors play a role in
determining how to feed an infant with a cleft.
Solids should be introduced to infants with a cleft lip and/or palate at the age of 4 to 6 months. Infants with a cleft palate may need
their food more liquefied than other infants their age who do not have a cleft. This can be done by adding extra breast milk or
formula to infant cereal, as it is the first food that should be introduced. A special problem for infants who have a cleft
palate is food coming through the nose. To help with this try giving small spoonfuls, presented at the front of the mouth.
Wait until one spoonful is swallowed before another is presented. If food does come out the nose wipe or rinse the palate
opening clean after feeding.




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                PROGRESSION TO SOLID FOODS




Progression to solid foods should occur as with any other child. A
registered dietitian can provide information on the specific types of foods
that are acceptable for each child's age group. Spoon feeding is
recommended to encourage the practice of lip closure. Liquids can be
given by cup staring at 5 months of age. Choking or gagging during
feedings can occur from overfilling the child's mouth with fluid. For the child
with a cleft palate, foods that are hard or sticky may get into the palate's
opening. Upright positioning is also important for this reason.
Nutrition is important during the growing years and beyond. Infants with
cleft lips and/or palates have the same nutritional needs as other children,
yet they may have feeding problems which make it difficult for them to
consume enough calories to meet their nutritional needs.




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           HOW TO CONTACT US

Cleft palate and Craniofacial centre
Department of head and neck surgery
Amrita Institute of Medical Sciences
Amrita lane
Elamakkara P.O,
Kerala ,India
                                       0091-484 –4001401 (direct dept)
kochi –682026
                                       0091-484 –4001423 (direct dept )
                                       0091-484-4001234 (hospital )
Sherrypeter@aims.amrita.edu
                                       0091-484 – (Fax)
Headandnecksurgery@aims.amrita.edu


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