Landon was born on 12/7/16 with a condition called metopic craniosynostosis (a suture on his skull on his forehead fused too soon). The condition was preventing his skull to expand normally as the brain grew, and as a result caused pressure on his brain and it deformed his forehead shape.
On 8/31/17 he had surgery to separate the suture and to alleviate the pressure on his brain, which in return alleviated a lot of his symptoms he had been suffering from with the pressure on his growing brain; losing weight, getting further behind on his milestones, crying all of the time, blank staring at people, ect.
A few months after surgery, mom and dad noticed that his skull shape was changing, but not for the better. We mentioned our concerns to his neurosurgeon and he brushed off our worries and said it looked fine.
Fast forward to July 2019 and his head looked even worse. Again, I bring it up to our neurosurgeon (through photos) and he continued to say it looked normal.
Something just didn't feel right and so I decided to email Landon's photos to a world renown surgeon who specializes in Craniosynostosis surgeries. He agreed that his head did not look normal and urged us to get a 3D CT scan.
I pushed for that CT scan locally and the imaging proved that there was indeed something not right with his skull. He now had another suture close (sagittal suture) and because that second suture was closed it was pushing his brain up to the top of his head and pushing outward toward his forehead as well.
It appears that the first surgery done to correct his metopic suture, may have not been done correctly and likely triggered this second suture to close.
Having the need for a second surgery due to a second suture closing is rare. His case is now much more complicated and requires a specialized doctor to correct the metopic surgery as well as address the closed sagittal suture.
Our insurance will not cover the cost or travel to go to Dallas, Texas and have this doctor who has extensive knowledge and experience dealing with complicated cranial cases such as Landon's. The local doctors haven't seen anything like this before, therefore do not have the adequate expertise to help correct the problem.
What the money is being used for:
The donations raised go towards Landon's surgery, airfare and hotel for myself, my husband and Landon.
As of right now, Landon does not appear to show signs of any intracranial pressure, but left untreated for too long, it can cause his skull to weaken and suffer from debilitating headaches and other complications. Due to these risks, it's been recommended that Landon have the surgery within the next 6 months.
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- John Beritzhoff
- Ruth Fletcher
- Steven Stuart