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Concerns about the Diagnosis: Hearing the diagnosis that your child has sagittal synostosis and that surgery is required will be very stressful and you may have a hard time accepting it. Furthermore, because the condition is so rare, you may not have heard of this before. Your child may be showing some signs that something is wrong, or may look perfectly normal. Deciding to Proceed with Surgery: Corrective surgery for sagittal synostosis is considered by most doctors to be cosmetic, so your doctor should tell you, as the parent, that it is your decision whether or not to have it done. The term "cosmetic" means that failure to do the surgery will not adversely affect the physical health of your baby. It does not mean that this surgery is in the same class as vanity cosmetic surgeries for insurance purposes. A small number of doctors say that there is an increased chance of mental retardation developing if the surgery is not done. We have not found any research to substantiate this or to disprove it. While you make your decision, keep in mind that most sources say that the ideal time to do this surgery is when the baby is between 3 and 6 months old. If your baby is already past this age, corrective surgery may still be done, but the complexity of the procedure will increase as your baby grows. We found this decision to be very difficult. What made us proceed with this surgery for both children is that we believed that they would have chosen to do it, if they were old enough to understand. Our pediatrician, whose advice we respect, counseled us to be thankful that this is a conditions that CAN be corrected, because so many others cannot. We have now been through this ordeal twice, and have spoken to several hundred parents who have shared this experience, and all have expressed that they made the right decision to proceed with surgery. |
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