CraniosyntoWHAT?

Today was the visit with the craniofacial clinic at Dell Children’s Hospital here in Austin. It didn’t go nearly as well as we had hoped….we were banking on “no big deal” knowing G’s head has always been a funny shape and lack of “symptoms” of brain issues.

As it turns out, there very well might be big concerns. Not being a doctor, I can’t explain it all in nearly as much detail, however in my layman’s terms: There is a suture in the back of the skull that fuses in adulthood – it stays open to allow for the brain to grow throughout childhood. 85% of the brain is formed by the age of 3, but there is a remaining 15% growth between 3 and adulthood (they don’t actually know at what age it typically fuses as it ranges all over the place). The doctor did an assessment of his skull and reviewed his prior MRI from 2013. She definitely has concerns that he has craniosyntosis, a birth defect in which one or more of the joints between the bones of a baby’s skull close prematurely, before the brain is fully formed. With craniosynostosis, his brain can’t grow in its natural shape and the head is misshapen. With the hundreds of doctor’s appointments over the past 3 years, I can’t believe this has never been mentioned – his head has always been huge, but no doctor ever seemed to have serious concerns.

As it stands now, the next step is for a CT scan of the skull to better see the sutures, and an MRI to see the brain and assess how much room is present for his brain to grow. If the results are of no significance, they will follow him. Otherwise, pending the level of significance, there are two courses of action:

1) a device of some sort is placed in his skull for a 3 day stay at the hospital which measures the pressure in this skull. This will provide more evidence of needing further action, or not.

2) surgery. A plastic surgeon, in conjunction with a neurosurgeon, open his skull and create new sutures to allow for expansion. Because G is already 3, this will most likely require taking bone from a rib or leg to create more “skull” and allow for growth over his lifetime. The goal is to have this surgery only one time and not have to open his skull again. This should allow for his head to be reshaped to be more “normal” and allow for plenty of future growth.

This obviously sounds overwhelmingly scary. The doctor did make a point to note this is not brain surgery, it’s skull surgery. It is awfully close to the brain, but it does sound an itty bitty better. 😉 Another bright side is that G has never plateaued in his therapy, he continues to make progress. If he had stalled out at some point, that might point to his brain being restricted and unable to develop new skills. We are hopeful that even if he is running out of room, he isn’t out of room just yet.

Without getting too wrapped up in the “what-ifs”, my immediate concern is the MRI/CT scan. Apparently it’s some super fast MRI that only requires a minute, so we are praying that will work and we can get good results from a local imaging center. His last MRI he had significant issues coming out of anesthesia, and I want to do everything to avoid that, as well as the whole hospital ordeal. We wait a week or so and then hopefully that will be scheduled. We have a follow up February 18th with the surgery team to determine next steps. Prayers are welcome 🙂

 

 

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