Isaac – Sagittal & Lambdoid

Baby Isaac4My son was born with sagittal, bilateral lambdoid craniosynostosis, (nicknamed the Mercedes pattern). I knew immediately when he was born something was wrong. Luckily my doctor listened and we began researching. My son was diagnosed at one month in age and had a full cranial vault reconstruction at 4 months at Primary Childrens Hospital in Salt Lake City, UT. I never knew anyone with this birth defect and because his form was so rare there were no articles I could read about the potential outcome. My son struggled for 3 1/2 years with cognitive areas as well as eating due to jaw and tongue issues. We were told he could have permanent mental impairments. This past eighteen months have been a miracle. We were told originally that hopefully his brain would heal in time and begin to function normally, but we wouldn’t know until about 4 years old. One day he looked at my Utah Jazz shirt and read the letters J-A-Z-Z. We had never taught him letters because we were still working on basic shapes. He was comprehending everything and his brain acted like a sponge absorbing any information. He just turned 5 years old and now reads, does basic addition, dresses himself, eats everything with no problems and is ready for regular kindergarten in the fall. I wish I had had someone that had been through a similar experience willing to talk with me. There was so much uncertainty for so long. Whatever I can do to help, you got it! I don’t want anyone to have to go through that fear of the unknown.

 

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