Almost as soon as Stanley exited the womb, Rob and I knew he had metopic craniosynostosis.
Metopic Craniosynostosis is a rare, congenital defect that causes the front (metopic) suture of the skull to fuse prematurely. If it's not corrected, it can cause increased pressure on the brain, developmental delays, sight problems, etc.
We were able to diagnose this rare condition so quickly because Savannah was also born with metopic craniosynostosis. As far as anyone knows, there's no genetic or hereditary cause for craniosynostosis, and the chance of two siblings having it is less than 4%. Basically, we just won the funny-head-shape lottery!
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| Stanley, top view |
When the metopic suture fuses early you get a ridge running down the center of the head to the top of the nose, and a triangular-shaped forehead. This also results in a pinching of the temples and eyes that are too close together.
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| Front view |
5 years ago, when Savannah was diagnosed, the most common corrective procedure was a Cranial Vault Remodel, where the surgeons take apart the front half of the skull, then break and reshape it. It's a 7+ hour, complex surgery, usually requiring a blood transfusion and at least a week stay in the hospital.
Now, however, they've developed an endoscopic surgery that can release the suture and any increased pressure. The surgery takes about 3 hours, and babies can usually go home from the hospital after one day. Post surgery, babies have to wear a helmet for 6-8 months that will shape the skull as the bone regrows.
We opted to try the less invasive surgery this time and when Stanley was 3 months old he had his surgery. The process went really smoothly, and he handled the whole thing like a champion. We're about 2 months into his helmet therapy and are really pleased with how it's progressing.
Hopefully this is our LAST craniosynostosis experience, and while it hasn't been easy, we count our blessings that it is correctable, that we have great medical care here in Houston, and that God has been watching over our sweet baby through this process.
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| Waiting for surgery in his lucky BYU onesie |
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| Right after surgery |
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| About 24 hours later, smiling at home |
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| Bandages come off 48 hrs post surgery, still pretty swollen |
1 comment:
In November, 1958, our second son was born with this condition. Doctors checked his reflexes and said his brain was fine and there was nothing to be done. No x-ray, nothing. They said I could rub his forehead, which I did when he didn't want to take a nap. Keeping up with his brother, he was precocious and very smart in school. In the fourth grade he was tested to be at seventh grade level in math. He had some balance problems and taught himself at a young age to overcome his fear of speed and height. He was a champion three-wheeler racer after high school. His mechanical skills are terrific. He had two years of college and his favorite skill is running a bulldozer. I never knew what the diagnosis could be until coming across this post and photos. I thank you for posting and solving a mystery for me. I thank God for my wonderful, successful son who is now 62. Doris Huffman, Delaware, Ohio
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