Saethre-Chotzen syndrome

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What types of surgeries will my child with Saethre-Chotzen syndrome need and at what ages?

The types of surgeries required will depend on the severity of your child’s Saethre-Chotzen syndrome. If your child’s skull bones fuse before they are supposed to, a surgery called cranioplasty is typically done between 9 and 12 months old. This surgery involves repositioning the bones of the skull so that there is enough room for the brain to grow, and so that the face develops the same way on both sides. New techniques for this surgery are now available at some hospitals, and your treatment team may be able to perform a minimally invasive form of cranioplasty before your child is 6 months old.

Additional surgeries may be required if there are problems with your child’s eyes as his or her face and head continue to grow. Abnormal formation of the bones of the face may can mean that there is not enough space for the eyes to grow the way they are supposed to. A surgery called fronto-orbital advancement is another method for repositioning the bones of the skull, and can be done to increase room for eyes so that they can grow properly. Dental surgery or other surgery on the middle of the face or on the jaws may be required depending on your child’s symptoms.

Your child’s treatment team will create a personalized plan for treating your child’s individual symptoms. The types of surgery required and the timing for those surgeries is unique to your child, and will be coordinated best by your child’s doctors. Speak with your child's doctor to set up a treatment and surgery plan.

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Can adults with Saethre-Chotzen Syndrome have children?

Will Saethre-Chotzen Syndrome affect my child’s performance in school?

Will my child be able to live independently with Saethre-Chotzen Syndrome?

Can adults with Saethre-Chotzen Syndrome have children?

Adults with Saethre-Chotzen can definitely have children. Saethre-Chotzen syndrome does not affect a woman’s ability to get pregnant or carry a pregnancy to term, and it does not affect how a man’s sperm will function or perform.

If you or your partner has Saethre-Chotzen, you may want to speak with your doctor or a genetic counselor when you are thinking about starting a family. Genetic counselors are specialists in speaking with families and helping them understand genetic conditions, and will be able to discuss the possibility of passing Saethre-Chotzen syndrome on to your future children. The National Society of Genetic Counselors (NSGC) is the professional organization for genetic counselors in the United States. Their website (http://nsgc.org/) is a great resource for locating genetic counselors in your region.

Will Saethre-Chotzen Syndrome affect my child’s performance in school?

Usually, individuals with Saethre-Chotzen syndrome have normal intelligence. This means that they can generally do schoolwork at the same level as their friends who are the same age. Mild to moderate developmental delays and learning challenges have been seen in some children with Saethre-Chotzen syndrome, but normal intelligence is much more common.

If your child’s Saethre-Chotzen syndrome is caused by a larger deletion of genetic material rather than a small change in the TWIST1 gene, it is more likely that they will have learning challenges or intellectual disability. This may mean they will need some extra help in school or will attend special education classes. Speak with your child's doctor to learn better how your child may be affected by Saethre-Chotzen syndrome.

Will my child be able to live independently with Saethre-Chotzen Syndrome?

This depends on how Saethre-Chotzen is expressed in your child. If your child has normal intelligence or mild learning difficulties, he or she may be able to live independently in adulthood. Adults with more severe learning challenges or intellectual disability may need to be supervised during daily activities, and may need to live with a family member or in a group residency. Speak with your child's doctor to better learn about your child's future.

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