As you may or may not know, Elias has a condition called craniosynostosis. Craniosynostosis, you might be asking, is when the head plates fuse together sooner than they should. When Elias was born his head was oblong instead of round. Sean and I noticed this right away but weren't really concerned until the doctor pointed out that there was a ridge at the top of his head and explained that he most likely has craniosynostosis. The doctor, who is not Elias pediatrician, said she would make a note of it to tell his doctor.
Once we were home from the hospital, Sean and I googled what craniosynostosis was. We read that surgery was likely involved in order to correct it. At Elias' two week appointment, Dr. Feierstein, Elias' pediatrician, told us she was also concerned with Elias' head. She arranged for Elias to get an x-ray done that day in order to confirm her diagnosis (which was AMAZING to have answers in one day instead of having to wait.) If you need a pediatrician, I would highly recommend Dr. Feierstein!
At 4:30 pm that day, Dr. Feierstein called to confirm that Elias does have craniosynostosis. His specific type is called sagittal synostosis, which means the suture (the space between the head plates) that runs from the front of the head to the back is closed. Apparently, this is the most common type of craniosynostosis. She told us that she is going to refer us to a team of doctors, a neurosurgeon and a plastic surgeon who would give us some options on what to do next.
At 4:30 pm that day, Dr. Feierstein called to confirm that Elias does have craniosynostosis. His specific type is called sagittal synostosis, which means the suture (the space between the head plates) that runs from the front of the head to the back is closed. Apparently, this is the most common type of craniosynostosis. She told us that she is going to refer us to a team of doctors, a neurosurgeon and a plastic surgeon who would give us some options on what to do next.
So where does that leave us now?
On Thursday, we had our first of many appointments with two doctors, a neurosurgeon and a plastic surgeon. At the appointment, the doctors said that sometimes they follow kids for awhile before they do anything and other times they immediately do surgery. Elias is one of the latter. His forehead is larger compared to the back, which comes to a "point." They also said that we could think about it for awhile before we made a decision. We could even opt to not have the surgery done, however, he wouldn't look like a "normal" person. I asked if Elias ever wanted to play hockey and had to wear a helmet, would he be able to. One of the doctors said that without the surgery, we would have to buy a custom helmet. Another question answered was whether Elias' brain was being damaged by the sutures being closed. The doctors said that although it is a possibility, it isn't very common for the brain to be affected by the head condition.
The decision?
The doctors did an excellent job of explaining how major the surgery would be. I don't know what I thought it would be but it is surgery! The surgery consists of taking out the portion of the skull that is fused together as well as cutting parts of the skull around the nape of head to allow for expansion. Once surgery is done, Elias' will have to wear a helmet for about 6 months.
Despite the craziness of having my 2 month old child go through this ordeal, we have decided to go with the surgery. In the office, I signed a form to get the process started. The neurosurgeon said that she would like to have his surgery done before he is 4 months old. I actually think she would have wanted it done earlier as babies heads grow so much.
Despite the craziness of having my 2 month old child go through this ordeal, we have decided to go with the surgery. In the office, I signed a form to get the process started. The neurosurgeon said that she would like to have his surgery done before he is 4 months old. I actually think she would have wanted it done earlier as babies heads grow so much.
So now we wait.
We wait for the confirmation of a surgery date that could be bumped due to more urgent cases. We wait for an appointment with the geneticist to get answers about whether this is a syndrome or just a rare case. We wait for an Ophthalmologist to test Elias' eyes to see if he is in pain and for the child development clinic. Mainly, we wait for God's help in all of this, trusting His hand to guide us and all the specialists we will see in the next year.
We wait for the confirmation of a surgery date that could be bumped due to more urgent cases. We wait for an appointment with the geneticist to get answers about whether this is a syndrome or just a rare case. We wait for an Ophthalmologist to test Elias' eyes to see if he is in pain and for the child development clinic. Mainly, we wait for God's help in all of this, trusting His hand to guide us and all the specialists we will see in the next year.
Despite his head, Elias is in good health. He is 8 weeks old today and yesterday he weighed 11 lbs 14 oz. He is growing nicely and loves to eat. He is mild mannered but definitely knows what he wants and lets us know it!
