Craniofacial conditions involve the skull and/or facial structure.
Below is a list of the most common craniofacial conditions seen in children waiting for forever families. We provide the following information for reference purposes only and cannot attest to the accuracy of the information. We highly recommend speaking with an experienced physician for further details on each condition.
Common Craniofacial Conditions
- Cleft Lip and Palate
Clefts occur as gaps or openings in the lip, palate, or both. The gaps are a result of incomplete closure when the baby’s facial structures were developing before birth. A cleft lip and/or palate may be classified as unilateral or bilateral. A unilateral cleft affects one side of the lip and may extend back along one side of the hard or soft palate. A bilateral cleft affects both sides of the mouth and may also comprise only the lip or may extend back into the hard and/or soft palate. Children may have a cleft lip and cleft palate together, an isolated cleft lip, or an isolated cleft palate. Some babies have only a cleft lip. However, most babies with cleft lip have a cleft palate or cleft in the gum line as well. Cleft palate also can occur by itself without cleft lip.
Babies with unrepaired cleft lip and palates may need to use special bottles for feeding, which fill in the gaps in the mouth to prevent milk or formula from dripping out of the mouth or nose. Babies need to be held to take a bottle and will take longer periods of time to feed. They may also need to eat smaller amounts and eat more often. As a result, children with unrepaired clefts in institutional settings are often underweight.
Studies suggest that a number of genes; as well as environmental factors, such as pollution, maternal smoking and drugs such as anti-seizure medications, may contribute to the development of orofacial clefts in babies. Other environmental factors that are suspected of playing a role include infections, maternal alcohol use and deficiency of the B-vitamin folic acid.
Children with cleft lip and palate may have difficulty speaking clearly or speech sounds may have a nasal quality, even after surgery. Children may also be prone to frequent middle ear infections and may be more likely to have dental cavities.
Treatment for children with cleft lip and palate often requires consultation from multiple specialties to ensure adequate care of the affected areas of the mouth, nose, and face. For instance, a child may need to see a plastic surgeon, dentist, orthodontist, speech therapist,and nutritionist. Many cleft “teams” are available to provide continued care as a child grows.
- Surgery: Treatment of the cleft lip and/or palate is performed by a surgeon to repair the gap. The amount of surgery required depends on the extent of the child’s condition. Children often need initial surgery to repair the lip, followed by another surgery to repair the palate. At times, a gap may occur after the palate has been repaired, which is called a fistula. Depending on the size, a fistula may need to be surgically corrected to completely close the gap. As the child ages, another palate surgery known as a bone graft may be necessary to provide permanent closure of the palate. The initial surgeries typically take place under the age of 1; however, children living in institutional settings may not have had access to surgical care and may be much older when surgery is done. Depending on the child’s condition and if any complications develop, there are many other types of surgeries that a child with a cleft lip and/or palate may need to undergo as part of correction, including ear tube placement, nose or lip revision, dental extractions, or placement of a prosthesis in the roof of the mouth.
- Dental Care: Children with cleft lip and palate often need orthodontics to realign the teeth. Some teeth may break easily or be prone to cavities, so regular dental care is important.
- Speech Therapy: Many children with a cleft lip or palate need speech therapy to develop appropriate sounds and to prevent a nasal quality to speech. Scar tissue may cause difficulties with a child’s abilities to create certain sounds or move the mouth to form words. Additionally, a child with cleft lip and palate should have a hearing evaluation to determine if fluid accumulation may be occurring in the ears or if the cleft somehow affects his ability to hear sounds and produce speech.
Children born with cleft lip and palate generally lead healthy lives.
- Hemifacial Microsomia
Other common names:
Brachial arch syndrome, facio-auriculo-vertebral syndrome, oculo-auriculo-vertebral spectrum, lateral facial dysplasia
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.
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.
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.
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.
Most children born with hemifacial microsomia are able to lead healthy lives.
Other common names:
Children born with microtia will have an underdeveloped or absent outer ear. Because of this, they will usually have atresia, which is an absence or underdevelopment of the ear canal and middle ear. It usually only affects one ear, and occurs more often in boys than girls. Because it usually doesn’t affect the inner ear, children with unilateral (one-side) microtia usually have normal hearing in the other ear. Children with bilateral (two-sides) microtia will typically not be able to hear without assistance.
The exact cause of microtia is unknown. It could be caused by a lack of blood flow to the ear during development. Certain medications during pregnancy and environmental factors are also possible causes.
Microtia is a common characteristic of hemifacial microsomia, Goldenhar syndrome and Treacher-Collins syndrome.
Treatment may involve surgery to open the ear canal. Advances in medicine now enable doctors to create an outer ear and give a child a more typical appearance. Some children with bilateral microtia will require a bone conduction hearing aid in order to hear.
Most children born with microtia are able to lead healthy lives.