Craniofacial


Bilateral Cleft Lip and Palate

Visit these blogs to read about families who have adopted children with this special need:

Great Are Your Wonders
There’s No Place Like Home
A Short Trip
Five Chili Peppers
Aging with Grace and Strong Will
And Then We Were Five

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Bilateral cleft lip and cleft palate is a condition in which the cleft usually begins at the lip, may or may not continue through the alveolar ridge to the soft and hard palate on both sides of the septum (bony ridge on the roof on the mouth that divides the left and right sides of the palate). The clefts may vary in complexity and may involve the nasal passages, airways and function of the ear canals and surrounding muscles.

Children with this condition often have one or both sides of the lip repaired in country, depending on the complexity of the lip cleft and the overall health of the child. Typically, the palate is repaired in the adoptive family’s country around three months post adoption if the child is one year or older. Ear tubes are commonly placed at the time of palate surgery as the condition of the palate usually affects the muscles that allow the Eustachian tubes to drain the middle ear. The need for other surgeries will be determined by a medical team comprised of (but not limited to) craniofacial surgeons, otolaryngologists, orthodontists, speech therapists and pediatricians.

What the medical team, patient and family may hope to achieve for the patient might include: normal speech, functional position of the teeth when the jaws are closed, hearing, proper growth and alignment of the facial/jaw bones and personal aesthetics of the face.

Resources:
Life Enhancement Association for People
Boston Children’s Hospital
International Craniofacial Institute
Cleft Palate Foundation
Cleft Lip and Palate Foundation of Smiles
Cleft Advocate
American Cleft Palate-Craniofacial Association
American Society of Plastic Surgeons
About Face
NIDCR
Cleft Lip and Palate Association
Wide Smiles
Seattle Children’s Hospital Cleft Lip and Palate
Faces: The National Craniofacial Association

Awareness and Advocacy:
Mia Moo

Facebook Groups:
Cleft Lip and Palate Foundation of Smiles
Cleft Lip and Palate Association
Cleft and Craniofacial Connection
CleftAdvocate
Boston Cleft Lip & Palate Page

Yahoo Group:
Adopting Cleft-Affected Kids

 

Read blog posts about Bilateral Cleft Lip and Palate on No Hands But Ours.


Facial Deformity

Visit these blogs to read about families who have adopted children with facial deformities:

It is Once Upon a Time
Ordinary Time
Gathering from the East
Casa de Alegria
Smiles and Trials
Flectamus genua

Linear Nevus Sebaceous Syndrome

Facial Deformity is a catch-all phrase to describe the visual results of varied and diverse causes for a child to look different. Facial differences can happen in utero or can be the result of a traumatic event, such as being burned or from tumor growth not related to neonatal development. Some of the genetic syndromes which are associated with facial deformities include Crouzon and Apert Syndromes which involve craniosynostosis (a term referring to the early closing of one more sutures in an infant’s skull); Klippel-Trunaunay Syndrome, which includes port-wine stains and venous and bony overgrowth (this can also affect other areas of the body as well); Neurofibromatosis, which causes tumor growth along nerve endings in the skin, brain, and other parts of the body, and Linear Nevus Sebaceous Syndrome, which causes overgrowth in utero of skin, brain, and bone tissue. Other ways the face can be affected are by birth marks (vascular malformations or hemangiomas), nevi, port wine stains, and clefting, including lip and palate (covered more fully in another area) and facial. Many of these deformities can be corrected with surgery, though multiple surgeries are often needed. 

Resources:
Plastic and Craniofacial Surgery for Infants and Children
Little Baby Face Foundation
Children’s Craniofacial Association
Children’s Craniofacial Association Yahoo group
Friendly Faces
Stanford Children’s Health
Changing Faces
About Face International Facebook Page
Apert Syndrome Awareness Facebook Page
My Mary Kate Facebook Page

 

Read blog posts about Facial Deformity on No Hands But Ours. (story coming soon!)


Hemifacial Microsomia

Visit these links to read about families who have adopted a child with hemifacial microsomia:

7 Days a Week
No Ordinary Family

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Children born with hemifacial microsomia will have underdevelopment of one side of their face, usually involving the ear, mouth and jaw. One side of the face will usually appear smaller than the other. The outer ear may be malformed or absent. Children may have hearing and speech difficulties. The severity can vary greatly between children. In more severe cases, a child’s skull, teeth, jaw muscles, middle ear and upper jaw may also be affected.

Causes:
The exact cause of hemifacial microsomia is unknown. It could be caused by a burst blood vessel in the face during development in-utero, which could cause slowed growth in that side of the face. It usually occurs sporadically, however research has indicated occurrences of more than one case in a family.

Possible complications:
Hemifacial microsomia can also a characteristic of Goldenhar syndrome, where a child will have abnormal growths on the eye and spinal deformities as well. With proper treatment, this syndrome generally has a very positive prognosis.

Treatment:
Because hemifacial microsomia affects each child different, they should be evaluated by a comprehensive craniofacial team. Treatment may involve surgery on the jaw including bone grafts and surgery to correct the outer ear. Speech therapy may also be necessary. Because growth is permanently inhibited on the affected side of the face, children will need to continue to be seen throughout adolescence.

Prognosis:
Most children born with hemifacial microsomia are able to lead healthy lives (Source).

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Resources:
Seattle Children’s Hospital
FACES
Rainbow Kids
Craniofacial Foundation of America

 

Read blog posts about Hemifacial Microsomia on No Hands But Ours.


Microtia/Atresia

Visit these blogs to read more about families who have adopted a child with Microtia/Atresia:

The Gang’s All Here!
Ears to Hear
The Berger 4
Seriously Blessed
Our Little Corner of the World
Fortunate Blessings

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Atresia

Aural atresia refers to the absence an external ear canal. When someone has aural atresia, there is a high incidence of malformation of the external ear and middle ear also, but the inner ear and auditory nerve are frequently normal.

A narrowed ear canal (i.e. one where the eardrum can be viewed, but the canal is narrower than normal) is sometimes referred to as a stenotic canal, or canal stenosis.

Aural atresia most commonly effects just one ear (unilateral), but can occur both ears (bilateral).

Atresia can be a symptom of a larger syndrome, such as Treacher Collins, Crouzon’s, Alpert’s, Preiffer, Klippel-Feil, BOR (Branchio-Oto-Renal), 18-q chromosome, as well as Hemifacial Microsomia.

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Microtia

Microtia literally translates from the Latin to mean “small ear”. Microtia varies from the complete absence of the ear (which is referred to as anotia) to a somewhat normal but small ear.

Microtia Statistics:

• Nearly twice as frequent in males as in females
• Averages occurrence is 1 in 6,000 when averaged across all ethnic groups
• Approximately 60 % unilateral right, 30 % unilateral left, 10 % bilateral

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Resources:
Microtia: Congential Ear Deformity Institute
Ear Community
International Center for Atresia Microtia Repair
Yahoo! Group: Atresia Microtia
Cochlear: Hear Now and Always

Leading Microtia Surgeons:
Dr. Sheryl Lewin
Dr. John Reinisch

 

Read blog posts about Microtia and Atresia on No Hands But Ours.


Tessier Cleft

Visit these blogs to read about families who have adopted children with this special need:

7 Days a Week
Life’s Little Wonders

Facial Clefts-image 2

A cleft is a gap in the soft tissue, bone, or both. Many people think of cleft lip or cleft palate as examples, and these types of clefts are by far the most common. However, some children’s clefts involve not only the mouth and nose, but also the rest of the face. A facial cleft may involve a split in the bones and skin (fissure) or a misshapen facial feature (dysplasia).

What is a Facial or Tessier cleft?

Clefts may involve the mouth, cheeks, eyes, ears and forehead and may continue into the hairline. These craniofacial clefts are often referred to as Tessier clefts. They are numbered from 0-14 to indicate the location and extent of the cleft using the mouth, nose and eye sockets as landmarks, with the midline designated 0. These more extensive conditions may also be described anatomically, such as “oro-occular cleft” and “fronto-nasal dysplasia.” Tessier Cleft 7 is when the soft tissue at the edge of the mouth is opened further than usual. It is often accompanied by skin tags near the ear on the side of the cleft. It is repaired by a plastic surgeon in one surgery. It can be related to hemifacial microsomia (Source).

Resources:
Rare Cranial Facial Clefts
Cleft Line

 

Read blog posts about Facial or Tessier Clefts on No Hands But Ours.


Unilateral Cleft Lip and Palate

Visit these blogs to read about families who have adopted cleft children:

Living Out His Love
Cleft/cleft palate as “minor” special need? One mom’s thoughts on the surgeries and therapies
A Bouquet of Blessings
An Arrow in our Quiver
Double Happiness
Ella and Elizabeth
Faith Hope and Love
Finally a Family of Five
Handsful
I Will Pull This Blog Over
Mixed Nuts
One More Ladybug
The Joys of Mommy
Under the Sycamore

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A cleft lip is a separation of the two sides of the lip. The separation often includes the bones of the upper jaw and/or upper gum. A cleft palate is an opening in the roof of the mouth in which the two sides of the palate did not fuse, or join together, as the unborn baby was developing. Cleft lip and cleft palate can occur on one side (unilateral cleft lip and/or palate), or on both sides (bilateral cleft lip and/or palate). 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.

Cleft lip and cleft palate are congenital defects, or birth defects, which occur very early in pregnancy. The majority of clefts appear to be due to a combination of genetics and environmental factors. The risks of recurrence of a cleft condition are dependent upon many factors, including the number of affected persons in the family, the closeness of affected relatives, the race and sex of all affected persons, and the severity of the clefts.

A child born with a cleft frequently requires several different types of services, e.g., surgery, dental/orthodontic care, and speech therapy, all of which need to be provided in a coordinated manner over a period of years. This coordinated care is provided by interdisciplinary cleft palate/craniofacial teams comprised of professionals from a variety of health care disciplines who work together on the child’s total rehabilitation.

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Resources:
Cleft Palate Foundation
The Cleft Lip and Palate Foundation of Smiles- Questions for your Doctor and Craniofacial Team
The Craniofacial Center
Cleft Advocate
The National Craniofacial Association
CCAI Cleft Video
Virginia Smiles- Letter to parents considering adopting a child with a cleft
Cincinnati Children’s Craniofacial Center
Adoption Nutrition (Cleft adoption packing list, typical surgery schedule, nutrition advice in adopted children with cleft)
Craniofacial Foundation of Utah
About Face
NIDCR
Wide Smiles
Shriners
Home Speech Home

Facebook Groups:
Cleft Lip and Palate Foundation of Smiles
Cleft Lip and Palate Association
Cleft and Craniofacial Connection
CleftAdvocate
Boston Cleft Lip & Palate Page

Yahoo Group:
Adopting Cleft-Affected Kids

 

Read blog posts about Cleft Lip and Palate on No Hands But Ours.


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