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Apert syndrome is a very rare genetic condition characterized by deformities of the head and limbs. These deformities present in many ways, all of which can affect health, function and lifestyle. A child with Apert syndrome needs advanced care from an interdisciplinary medical team that includes:
This diverse team of medical professionals is the heart of the Boston Children's Craniofacial Anomalies Program—dedicated to providing patients with Apert syndrome, and their families, with treatment, education, guidance and support.
To speak with a member of Boston Children's Craniofacial Anomalies Program about treating your child's Apert syndrome, please contact 617-355-6309.
Usually Apert syndrome presents itself in a few ways, such as:
craniosynostosis: premature fusion of the growth plates of the head, resulting in deformity of the head and possible increased pressure on the brain
midfacial hypoplasia: decreased growth of the middle part of the face, causing potential airway obstruction, sleep apnea and a concave facial profile
syndactyly: fusion of the fingers or toes
To make comprehensive diagnosis of Apert syndrome:
To correct skull shapes of children with Apert syndrome, a procedure, known as a calvarial remodeling, or fronto-orbital advancement, is usually performed when the child is between 9 and 11 months old. This operation involves a plastic surgeon and a neurosurgeon who will work together to release the fused sutures and reshape the skull.
It is likely that when your child has completed growth he/she will need a second procedure called a Le Fort III advancement. This operation will help bring the middle part of the face forward and reduce the "flattened" appearance and help fix any airway issues that may remain. In some cases the airway issues will need to be treated sooner; in these children, distraction osteogenesis, (a surgical process used to reconstruct skeletal abnormalities) may be used to complete the Le Fort III advancement.
The hands of people with Apert syndrome can be classified into three categories (called Upton classification) based on the degree of soft tissue and skeletal involvement. For most Apert syndrome patients, multiple procedures and revisions will be required throughout childhood.
Most of your child’s major fused finger separations will be completed by 2 years of age. If the thumb is involved, repair will begin at 3 to 6 months to obtain optimal function. If the thumb is not involved, the other fingers will be separated between 6 months and 2 years.
Toes that are fused have very little effect on a child’s ability to walk or run. Operations to separate them are not generally medically necessary. You may, however, want to have your child’s toes separated to improve the appearance of the feet to help him/her feel less self-conscious. This operation can be done at 5 to 7 years of age.
The abnormal shape of the face can also affect the position of the teeth and the “bite.” Many children have an underbite, as well as misaligned teeth. These children should visit a pediatric dentist when the teeth start to come in—no later than 2 to 3 years of age. It's recommended you seek out a pediatric dentist or orthodontist with experience in treating children with craniofacial disorders.
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