Cleft Lip and Palate 4 Part Presentation Handout | 1

(Shutterstock, 2016)

4 Part Presentation Handout

Jennifer Eazell
University of La Verne
October 8, 2016
Cleft Lip and Palate 4 Part Presentation Handout | 2

CONTENTS
Cleft Lip and Palate: Medical Overview 3

Developmental Issues 5

Cognitive

Infant/Toddler 5

Preschool 5

School Age 5

Teen 5

Physical

Infant/Toddler 6

Preschool 6

School Age 6

Teen 6

Psychosocial

Infant/Toddler 6

Preschool 7

School Age 7

Teen 7

Behavioral

Infant/Toddler 8

Preschool 8

School Age 8

Teen 8

Pain Management 8

Cultural/ Family-Centered 9

Child Life Assessment 9

Child Life Education and Preparation, Interventions, and Medical Script 10- 14

References 16
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Cleft Lip and Palate

Medical Overview:

What is it?

 Cleft Lip/Palate is a birth defect that causes malformation of the lip and/or palate.
 It occurs typically in 1 of every 600 live births.
 No specific known etiological causes but some factors could be:
o Genetics- history of cleft lip/palates in family
o Environment- exposure to alcohol, cigarettes, drugs, and teratogens during
embryotic development

Types?

 A Cleft Lip can occur unilaterally or bilaterally, and can be present as a simple
separation at the lip or can reach all the way to the nose. A Cleft palate can occur both as
a partial separation of the soft palate and a complete separation through the soft and
hard palate. Additionally, A combination of cleft lip and palate can also occur at varying
degrees of severity.
 Unilateral Cleft Lip (Figure 1A)- A birth defect that occurs along one side of the lip,
and can be a slight notch or a complete separation extending upwards towards the
nasal cavity.
 Bilateral Cleft Lip (Figure 1B)- A birth defect that occurs along two sides of the lip,
and can be a slight notch or a complete separation extending upwards towards the
nasal cavity.
 Partial Cleft Palate (Figure 2)- A birth defect that causes a partial separation to
occur in the soft palate in the mouth.
 Complete Cleft Palate (Figure 3)- A birth defect that causes a complete separation
to occur in the soft and hard palates in the mouth.

Figure 1 (A & B):

A B

Figure 2 (A & B):

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A B

Medical Procedures/Treatments?

 Cleft Lip/Palate is typically treated by a cleft/craniofacial multidisciplinary team

including:
o Plastic surgery
o Otolaryngology
o Orthodontics
o Speech-language pathology
o Pediatrics
o Nursing
o Audiology
o Social Work
o Psychology
 Treatments: Although Cleft Lip and Palate are typically repaired through surgery in
the first years of life; generally long-term care is needed in order to treat the lasting
implications of the defect. These future procedures, treatments, and services
include, but are not limited to:
o Initial and Secondary Surgical Correction- multiple lip, nose, and scar
revision surgeries may be required later in life.
o Speech therapy- significant speech disorders can occur due to the slight
lasting variations of the lip/palate structure.
o Auditory
o Orthodontics- absent, rotated, and/or malformed teeth as well as varying
structural differences in children with Cleft Lip/Palate may occur resulting in
the need for orthodontic repairs.
o Upon skeletal maturity, orthognatic surgery may be necessary in order to
realign and shape the structure of the facial bones.
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Developmental Issues Associated with Cleft Lip/Palate:

Cognitive:

 Infant/Toddler-
o The malformed palate and lip of the infant
can effect an infants ability to suck making
breastfeeding and bottle-feeding a challenge,
which can also result in a decreased intake of
key nutrients during crucial cognitive
development periods for child (Hockenberry
& others, 2015). This can greatly effect brain
development resulting in cognitive delays.
Toddlers also do not have a clear cognitive
comprehension of reality yet, so they may
interpret their cleft lip/palate as their fault
for their own badness (Young, 2015).
 Preschool-
o At the preschool age, it is hard for them to differentiate between reality and
fantasy so may start to experience imaginary or “magical thinking” in terms
of the reasons that they have to be hospitalized and/or have cleft lip/palate.
Children may begin to think that they caused their cleft lip/palate and it is a
punishment for something they did in the past that was “bad” (Young, 2015).
It is important to provide interventions that make it clear for the child that it
is not their fault that they have cleft lip/palate and need surgery.
 School Age-
o Due to their stage of cognitive comprehension, the patient may interpret
their cleft lip/palate and their residual corrective surgeries as their fault for
all past “wrong-doings” (Young, 2015). It is important to ensure the child that
that is not the case.
 Teen-
o In addition to speech delays, children may also develop auditory delays
and/or loss as well due to cleft lip/palate as a result of the close connection
between the nose, mouth, and ears. Cleft Lip/Palate can result in improper
drainage in the middle ear, which can cause auditory delays or hearing loss.
In combination with speech delays and hearing issues, learning can become
increasingly difficult for children with cleft lip/palate, which can result in
lasting cognitive delays due to significant impairments to the learning
process without proper interventions in place at the child’s schools through
individualized education plans.
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Physical:

 Infant/Toddler Considerations-
o Hospitalization in general can result in decreased gross motor activity, which
can lead children to development physical delays in terms of mobility and
movement (Young, 2015).
 Preschool-
o Preschool are often fearful of physical mutilation at this stage so they will
likely be fearful of the correctional surgery that may be necessary (Young,
2015). As the child is learning to speak at this time, children with cleft
lip/palate may also develop speech delays due to the malformation of their
mouth/palate structure. These delays will likely require the child to begin
speech therapy and to continue speech throughout their schooling.
 School Age-
o Due to decreased peer activity and isolation in the hospital during corrective
surgeries, the child may develop a decrease in physical activity or a sense of
“over” activity and need a means of getting their physical hyperactivity out
(Young, 2015). It is important for the Child Life Specialist to provide
opportunities for physical movement at this time and peer interaction to get
the child’s physical mobility and development stimulated in a positive
welcoming environment with kids their age.
 Teen-
o Lasting physical delays in teens with cleft lip/palate can include hearing loss
and speech delays as well as a potential for permanent physical
malformation of the palate/lip if facial reconstructive surgery is not
performed. Their physical appearance can lead to self-esteem issues due to
scarring or possible lasting structural deviations of the mouth/face.

Psychosocial:

 Infant/Toddler Considerations-
o The confinement of hospitalization can lead children to either withdrawal
from socialization or can lead “over” activity. Interruption of mother and
child bonding time due to medical fragility and possible adversity to the
child’s appearance can lead to under-stimulation and possibly failure to
thrive (Young, 2015). It is important for Child Life Specialists to facilitate key
family bonding tomes for children and families through family-centered care
interventions. Child may also exhibit separation anxiety from parents during
this time. Additionally, toddlers are in the autonomous stage of development
according to Erikson’s theoretical model so the child is likely experiencing a
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sense of loss of autonomy and lack of control in the hospital environment

(Young, 2015).
 Preschool-
o They may feel a loss of control over usual routines, such as their school and
home schedules, which can emotional struggles and decreased socialization
(Young, 2015).
 School Age-
o The child will likely require speech therapy likely throughout their
elementary school years (Hockenberry & others, 2015). Their speech delays
may develop self-esteem issues due their peers bullying them or making fun
of the way they talk. The school age child with cleft lip/palate may also miss
school due to hospitalizations for corrective surgeries, which could result in
the child feeling a sense of loss, like they are missing out on something.
Children are in Erikson’s Industry versus Independence, or Latency, Stage of
development which could result in them feeling a sense of inadequacy in
their friend group if they are away from school for long periods of time for
hospitalization due to reparative surgery. They may feel as sense of
inferiority to their peer group as well due to their absence which cold result
in self-esteem and competence issues.
 Teen-
o The teen may develop a sense of self-consciousness and self-esteem issues as
a result of their scars. Teens are generally more worried about what others
think about them and develop an obsession with body image so it is possible
that they may become anxious and self-conscious over their facial scars as a
result of multiple cleft lip surgeries. Additionally, the teen may still have
residual speech impediments that never completely were fixed due to their
varying mouth/palate structures (Hockenberry & others, 2015). Anxiety may
also develop surrounding any possible reconstructive/plastic surgeries that
may take place at this time after the teen’s bones have fully matured and
facial bone surgery can be more likely recommended now. Loss of social
interaction with peer group at this time due to hospitalization for corrective
surgeries can also cause a sense of loss for teens at this time.

Behavioral:

 Infant/Toddler Considerations-
o Due to the confinement of the hospital setting, infants and toddlers may
exhibit withdrawal or over-active behaviors (Young, 2015).
 Preschool-
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o In this stage, children may exhibit regressive behavior (i.e., tantrums,

clinginess, quietness, anger, withdrawal, aggressiveness, and/or non-
compliance) (Young, 2015).
 School Age-
o School Age Children with Cleft Lip/Palate in need of corrective surgery and
thus hospitalization may experience loss of control, autonomy, and
competence resulting in anger, aggressive behavior, frustration, sadness,
withdrawn behavior and/or other atypical behaviors for the child (Young,
2015).
 Teen-
o Teens are hyperaware of physical changes in their body due to their illness
or injuries (Young, 2015). Teens with cleft lip/palate are not an exception.
Teens are likely just as self-conscious about their physical appearance.
Additionally, during hospitalizations for reconstructive surgeries, they are
away from their friend group, which is their primary support system as teen
(Young, 2015). Both their self-esteem issues and loss of emotional support
can result in behavioral changes such as withdrawal, isolation, intolerance,
lethargy, over activity, difficulty with authority, and/or other atypical
behavior for the teen.

Pain Management:

 A Cleft Lip/Palate in and of itself is not painful but can great danger for a child if not
repaired, including death or severe developmental delay due to lack of nutrients in
infancy. The treatment is what can be very painful for children and families. The
child is put to sleep during the initial surgery and supplemental reparative
surgeries, but after the surgery, there is a period of recovery that can be very painful
for children. It can also be painful for families to watch their children go through
that physical pain. Nurses and doctors provide pain medicine for children but
sometimes it does not prove enough. That is where Child Life Specialists can come in
an provide that pain management for children through various distraction and
diversion techniques and activities, including, but not limited to the following
(Young, 2015):
 Sensory Stimulation (Sight, Touch, Sound, Smell, Taste)
o Kaleidoscopes
o Books
o Movies
o Sensory Bottles
o Sound Machines
o Music
o Tactile Walls with various textures
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o Yoga
o Aromatherapy
o Guided Imagery
o Etc.
 Infant, Child, and Adult Massage
 Movement and Exercise (if medical issue permits)
 Expressive Therapies
o Art projects
o Journaling
o Etc.

Cultural/Family-Centered Care:

 According to the textbook Wong’s Nursing Care of Infants and Children by Hockenberry
and others (2015), Cleft Lip/Palate occurs most often in Native Americans and Asians. It is
important to be aware of the needs of children and families who are Native American or
Asians in order to provide cultural sensitive care. It is crucial to provide culturally sensitive
care for any other child and family who walk through your door. Children and families
should feel safe and accepted regardless of their gender, sex, sexual orientation, country of
origin, religion, and/or background. Our differences should be celebrated, not ignored.
Everyone is entitled to their own personal beliefs and child life specialists should embody
that idea of diversity and cultural acceptance in order to make every family and child feel
safe. IN order to celebrate a family’s diversity, it is important to find out more about them
and provide opportunities through family-centered therapeutic interventions that incorporate
their personal views/ individuality (i.e. if they are Muslim, then the CLS should provide
avenues for Islamic expression and celebration if the family wishes).
 In terms of Family-centered Care, Child Life Specialists need to help facilitate
interactions and interventions that promote coping and understanding of the cleft
lip/palate for the family as a whole. Additionally, the provision of family-centered care
provides bonding time for the ill child and family that can help provide a support
system for the patient during their time of need. Family-centered care also encourages
that no family member feels left out and that everyone is an important component of
their team. For example, siblings of a newborn infant with Cleft Lip/Palate should be
considered and included to in the infants health care and psychosocial care process
because everyone is grieving with the loss of a “perfect” baby and coping with the fact
that their baby sister or brother is sick which can be an emotional struggle for siblings
too.

Child Life Assessment

 The following Child Life Assessment description outlines some of the key components
that a Child Life Specialist should look for in order to assess a child and family’s needs
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and/or coping abilities. Additionally, it can help a Child Life Specialist determine where
to start in terms of interventions given the background information obtained.

Child Life Assessments Key Features (Young, 2015):

 Child’s Chronological Age, Developmental Age, Background Info.

 Family Dynamic, Family Make-Up
 Siblings (Developmental Ages, Names)
 Family Medical History
 Special needs of child
 Child’s medical history (Possible history of hospitalization)
 Temperament of the child
 Child Life Interventions provided (i.e., introduction to services, rapport building,
procedure preparation, illness education, coping activities, surgical preparation,
pain management activities, continued services following discharge, discharge
planning)

Child Life Education and Preparation, Interventions, and Medical Script:

Education (Medical Terms, according to Merriam Webster.com and the textbook, Wong's
nursing care of infants and children (2015) by Hockenberry & Wilson)

 Cleft Lip- a split in the upper lip that some people are born with (merriam-
webster.com, 2016).
 Unilateral- of, relating to, or affecting one side of a subject (merriam-
webster.com, 2016).
 Bilateral- of, relating to, or affecting the right and left side of the body (merriam-
webster.com, 2016).
 Cleft Palate- a split in the roof of the mouth that some people are born with
(merriam-webster.com, 2016).
 Bifid uvula- the mildest form of cleft palate with essentially no functional impact on
speech and feeding (Hockenberry & Wilson, 2015).
 Nasal Alveolar Molding (NAM)- taping of the upper lip prior to surgical repair in
order to bring the segments of the lip and alveolus into better alignment prior to
surgical repair (Hockenberry & Wilson, 2015).
 Velopharyngeal- of or relating to the soft palate and the pharynx (merriam-
webster.com, 2016).
 Nasopharyngoscopy- an endoscope for visually examining the nasal
passages and pharynx (merriam-webster.com, 2016).
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 Otolaryngologist- a medical specialty concerned especially with the ear,

nose, and throat (merriam-webster.com, 2016).
 Malocclusion- abnormality in the coming together of teeth (merriam-
webster.com, 2016).
 Laryngospasm- spasmodic closure of the larynx (orthe modified upper part
of the trachea… that contains the vocal cords) (merriam -webster.com, 2016).
 Stridor- a harsh vibrating sound heard during respiration in cases of
obstruction of the air passages (merriam-webster.com, 2016).

Interventions and Preparations:

Intervention Developmental Age Benefits

Finger Painting Infant/Toddler,  Sensory Stimulation

with different Preschool, School Age  Expressive therapy (provides
textured tools artistic and emotional release)
 Hands on activity
 Provides a sense of control in an
otherwise chaotic hospital
environment

Mad Libs Preschool- Teens  Humor therapy

 Provides relaxation
 Emotional expression through a
release of pent up emotions
 Builds rapport

Painting to music Infant/Toddler- Teens  Stimulates senses

 Provides diversion/distraction
from pain
 Provides an environment for
natural play
 Freedom of choice
 Emotional expression and
relaxation.

Photography Infant/Toddler- Teens  Children, parents, and/or

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and/or siblings can help use

Scrapbooking photography therapy to help
memorialize and cope with their
experience
 A form of artistic and emotional
expression, relaxation and
diversion from the scariness of
hospitalization and surgery for
children and families with Cleft
Lip/Palate

Animal Visits Infant/Toddler- Teens  Promote physical therapy by

encouraging children to get up
and out of bed after surgery
 Can increase motor development
by stimulation movement
 Can provide unconditional love
and acceptance regardless of
physical appearance which can
help with kids who are feeling
embarrassed about their scars
 Emotionally uplifting
 Can greatly benefit the children
with special needs to because of
the emotional connection and
unconditional love of the animal

Band-Aid Family Infant/Toddler-  Can help establish rapport

School Age  Provide emotional expression
 Help in the assessment of the
family dynamic of the child
 Can provide family-centered
care if parents are encouraged to
help younger children or be
apart of the craft in general
 Medical Play- Familiarization
with the hospital environment
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Reading of book Infant/Toddler- Teen  Bibliotherapy- emotional

about a child expression
with cleft palate  Education on procedures, illness,
(developmentally treatment, and possible
appropriate) outcomes
 Provides child with knowledge
that they are not the only ones
who have gone through this and
that they can get through it
 Provides a better understanding
and familiarity of Cleft
Lip/Palate for children

IV Procedure Infant/Toddler-  Provides familiarization with

Teaching Tool School Age hospital environment and
with Teddy Bear procedures
and  Provides emotional preparation
Developmentally for procedures
Appropriate  Medical Play therapy
Medical Play  Hands-on activity
tools  Provides a sense of interaction
and control over the procedures
that are going to take place

Self-Esteem Art:  Emotional expression

Feelings Wheel  Physical release
with paint darts  Artistic expression
 Helps in self-esteem issues
surrounding scarring and peer
perception of them
 Helps to develop a sense of self
 Confidence building
 Provides a sense of play and
control in hospital environment
 Can help provide a “sense of
mastery” for school age children
who think they are missing out
and feel inferior, according to
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Erikson’s developmental stages

(Young, 2015).

Super Hero Infant/Toddler-  When the child is not feeling

Dress-Up Box School Age very brave/strong or before
their big reparative surgery for
Cleft Lip/Palate help them pick
from the super hero dress up
box that you will provide.
 Emotional expression
 Self-esteem boost
 Confidence building
 Imaginary Play for preschool
children that can help provide
diversion/distraction from pain
of procedure

Medical Script:

 Scenario: Mother, Casey, gives birth to her child and is trying to breastfeed her child and
the infant proceeds to cry even after feedings. The doctor comes in and does an
assessment on the child. He determines that the child has a partial cleft palate that is
preventing the child from getting adequate nutrition from breastfeeding. He informs her
that surgery is needed to fix the malformation as soon as possible so the child can eat
and develop normally. Child Life is called in to help the mother understand what is
happening and help the family cope with the new diagnosis.
 Developmental Stage of Child with Cleft Lip/Palate: Infant
 Mother’s developmental age: 28 years old, first child

Conversation:

CL: Hello, Casey. May I come in?

Casey: Sure.

CL: Hi, Casey. I’m from Child Life and I’m here to help you better understand what’s
happening to you in the hospital and what is going on with your baby. What’s your baby’s
name?

Casey: Isabella. Bella, for short.

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CL: Ok, well do you know where Bella is now and why?

Casey: Yea, the doctors said she wasn’t getting enough to eat so they have to preform
surgery on her because has something called cleft palate.

CL: Yes. She has Cleft Palate. Do you know what that is?

Casey: Not really.

CL: Ok, well I brought a book with me here today with some pictures and some information
on it if you’d like to take a look.

Casey: That would be great! Thank you! I’m so nervous. I have no idea what I can do for her.
I just want to help. Is it going to hurt? Will she remember it??

CL: Yes, it will be painful, I’m afraid but no they doctors do not believe she will have an
memory of it due to how little she is and her brain is still developing.

Casey: Oh ok. That’s good. How can I help with them pain? Can I touch her?

CL: Yes you can touch her! Gently of course, but it is actually encouraged because sensory
stimulation and touch has actually been proven to help lesson the pain in infants after
surgery, as well as help increase her developmental progress [(Kelmanson & Adulas, 2009)].

Casey: Oh wow. Ok thank goodness. Thank you for all your help.

CL: No problem, Casey. If you need anything, let your nurses know and they will find me,
but I will be back later to check on you and help you and Isabella throughout this entire
process, if you’d like.

Casey: Yes, please. That would be wonderful. Thank you. I’ll see you later. [Opens book on
Cleft Palate and starts reading].

Reference

Animal Assisted Therapy (Handout provided in ASCL 530 A from Dr. Leslie Young)
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Art Therapy and Child Life- Student Information (Handout provided in ASCL 530 A from Dr.

Leslie Young)

Assessment and Documentation in Child Life (2015). (Handout provided in ASCL 530 A from

Dr. Leslie Young)

Cover image (2016). Retrieved from http://www.shutterstock.com/pic.mhtml?tpl=46043-

43068&utm_medium=Affiliate&utm_source=46043&utm_campaign=Visualphotos%20

LLC&irgwc=1&id=467967815

Erik Erikson Developmental Stages from Patient Teaching, Loose Leaf Library (Handout

provided in ASCL 530 A from Dr. Leslie Young)

Expressive Therapy- Symbolic Therapy (Handout provided in ASCL 530 A from Dr. Leslie

Young)

Figure 1 (2016). Retrieved from

http://www.mayoclinic.org/~/media/kcms/gbs/patient%20consumer/images/2013/08/26/1

0/45/ds00738_im02605_fl7_cleft_lipthu_jpg.png

Figure 2 (2016). Retrieved from http://www.tour2india4health.com/pic/cpla.jpg

Hockenberry, M. J., & Wilson, D. (2015). Wong's nursing care of infants and children. St.

Louis: Elsevier-Mosby.

Humor Therapy/Laughter Therapy (Handout provided in ASCL 530 A from Dr. Leslie Young)

IV Procedure Teaching Script (Handout provided in ASCL 530 A from Dr. Leslie Young)

Jean Piaget Cognitive Development (2015). (Handout provided in ASCL 530 A from Dr. Leslie

Young)
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Kelmanson, I.A., & Adulas, E.I. (2009). Massage Interventions and Developmental Skills in

Infants Born with Low Birth Weight. Early Child Development and Care. 179(7).

Doi:10.1080/03004430701538794

Leslie- Class Interventions- Medical Therapy (Handout provided in ASCL 530 A from Dr. Leslie

Young)

Medical Terms (2016). http://www.merriam-webster.com/dictionary/cleft%20lip

Music and Movement Therapy for Child Life Specialists (Handout provided in ASCL 530 A

from Dr. Leslie Young)

Pain Management Techniques for a Child Life Specialist (Handout provided in ASCL 530 A

from Dr. Leslie Young)

Photography Therapy (Handout provided in ASCL 530 A from Dr. Leslie Young)

The Impact of Hospitalization on Various Stages of Development (2015). (Handout provided in

ASCL 530 A from Dr. Leslie Young)