Lambdoid Synostosis
We took Silas to Children's Hospital in St. Louis yesterday (8/31). The doctor came in and said, "Oh wait, let me go see if the pediactric neurosurgeon is available for this meeting." So we obviously assumed that Silas' head was not purely a cosmetic issue but would need surgery. When the doctor came in again he confirmed it.
Silas will need surgery and it is a major surgery. He has Craniosynostosis which is found in about 1 in 3,000 births. (Take that "doctor" from Uganda who told us to lay him on his other side when he sleeps!) Silas' case is even more rare as it only occurs in 2.5% of the 1 in 3,000 births.
I'm going to do my best to anticipate your questions.
What is wrong with his head?
Silas is missing one of his "growth fractures." You know how they put the cracks in the sidewalks on purpose so that they concrete can expand and contrast? Silas is missing one of those. As the brain grows it pushes the skull out to make room. Silas' brain is growing normally so it's pushing out at the other places, which is why his head looks crooked.
What would happen if they didn't do surgery?
Silas would have a 50% of having severe mental retardation. He would almost definitely have severe headaches and learning disabilities. (Just imagine what would happen if your brain grew and had no place to go.) He would also have an EXTREMELY misshapen head. It's sort of obvious now, but it would stick out huge if left undone.
What is the surgery going to be like?
Here's the big part. They said it's about a 4 hour surgery, with about 4 days in the hospital recovering. That's if everything goes well. The doctor's would have like to have done this surgery when he was much younger and his head was more pliable. This is a much bigger deal now that his skull has hardened.
They will cut him from ear to ear like a headband in a zig-zag cut. They do a zig-zag because it covers up better with hair. Then they will take pieces of the skull and reshape and file them in order to make them grow correctly. Then they will put them back. Sounds easy right?
Will he have a scar?
He will have a scar for the rest of his life. Because he's African his hair should cover it pretty well. I'm sure for the first few months it will be pretty gross.
How is Silas doing?
He has no idea what's going on :)
How is your family doing?
We're doing very well. We didn't cry and we aren't really that worried. I think we did all of our crying and worrying in 2011 when we didn't know if we would ever get him home. We kind of got into the mindset of just seeing obstacles as things that won't stop us but just slow us down some. This is one more obstacle.
God has guided us and blessed us through this whole process and this is just one more piece. We have not scheduled the surgery but the doctor told us it should be in the next couple of months. We'll keep you posted.
Silas will need surgery and it is a major surgery. He has Craniosynostosis which is found in about 1 in 3,000 births. (Take that "doctor" from Uganda who told us to lay him on his other side when he sleeps!) Silas' case is even more rare as it only occurs in 2.5% of the 1 in 3,000 births.
I'm going to do my best to anticipate your questions.
What is wrong with his head?
Silas is missing one of his "growth fractures." You know how they put the cracks in the sidewalks on purpose so that they concrete can expand and contrast? Silas is missing one of those. As the brain grows it pushes the skull out to make room. Silas' brain is growing normally so it's pushing out at the other places, which is why his head looks crooked.
What would happen if they didn't do surgery?
Silas would have a 50% of having severe mental retardation. He would almost definitely have severe headaches and learning disabilities. (Just imagine what would happen if your brain grew and had no place to go.) He would also have an EXTREMELY misshapen head. It's sort of obvious now, but it would stick out huge if left undone.
What is the surgery going to be like?
Here's the big part. They said it's about a 4 hour surgery, with about 4 days in the hospital recovering. That's if everything goes well. The doctor's would have like to have done this surgery when he was much younger and his head was more pliable. This is a much bigger deal now that his skull has hardened.
They will cut him from ear to ear like a headband in a zig-zag cut. They do a zig-zag because it covers up better with hair. Then they will take pieces of the skull and reshape and file them in order to make them grow correctly. Then they will put them back. Sounds easy right?
Will he have a scar?
He will have a scar for the rest of his life. Because he's African his hair should cover it pretty well. I'm sure for the first few months it will be pretty gross.
How is Silas doing?
He has no idea what's going on :)
How is your family doing?
We're doing very well. We didn't cry and we aren't really that worried. I think we did all of our crying and worrying in 2011 when we didn't know if we would ever get him home. We kind of got into the mindset of just seeing obstacles as things that won't stop us but just slow us down some. This is one more obstacle.
God has guided us and blessed us through this whole process and this is just one more piece. We have not scheduled the surgery but the doctor told us it should be in the next couple of months. We'll keep you posted.
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