BriansMom
06-10-2008, 01:44 AM
My Son was born on September 7, 2007. I had experienced a very easy pregnancy with the exception of having pre-term contractions at 20 weeks and again at 30 weeks. I stayed in the hospital for one night each time. Other than that, I sailed through the pregnancy with no nausea, no heartburn, no soreness...nothing. I had an amnio and level 2 ultrasound and everything looked great. We were ready for the baby and just waiting for him to come at the end of the summer.
He ended up having to be delivered by c-section because I developed pre-eclampsia in the last days of the pregnancy and the doctor decided to get him out sooner since I was not even dilated or effaced. I was very scared but so happy to see him at last.
If I am 100% honest with myself I have to admit that I felt there was something "off"about how he looked from the get go. But he did not have an obvious ridge or a triangular shaped head at that point. He had kind of a cone shaped head, and from his very first appointment I started asking the pediatrician about it. Of course she shooed me away and told me it was just moulding from birth..("even though he was by c-section I thought?")
To complicate matters, at around 6-8 weeks I started noticing that Brian would only look to one side. His toys would all be on his right side...and here Brian would be, staring at a blank wall on his left. It wasn't normal and I just knew it. But when I took him to the DR they told me he didn't have torticollis (turns out later he did.) Because of the torticollis,his head flattened in the back...and this added to the oddness of the shape. I asked his pediatrician at 6 weeks, 3 months and 4 months about his head shape and she blew me off each time. One time she even told me : He has a NICE head shape!"
Finally at 5 months I demanded to go get a head scan since I thought what he needed was a helmet for plagiocephaly. So my pediatrician actually had the nerve to say "Oh Brian, your mom wants to make you a hair model!" I ignored her and took my referral to the scan place and the neurosurgeons office....where my life would change in a minute.
Turns out the flattening is not the issue the doctor told me when he saw Brian and proceeded to explain what Craniosynostosis is. I decided to get a second opinion because this first dr told me that he felt the procedure was only cosmetic and felt it was more important for girls! WHAT IS IT WITH THESE DOCTORS???
So I took us to Shands, a very well respected teaching hospital and met with the team there who rated Brian a 6-7 as far as severity. After discussing the surgery and risks we scheduled a date. The decision was painful for my husband and I because we felt like if we didn't do it one day he would look at us and say "why didn't you fix me?" but then if you do it, you run the risk of losing your baby and then we would never forgive ourselves. So it was very very hard.
But when the day came, it actually went much more smoothly than I thought it would and tomorrow will be a week since the surgery. I am not sure what the future has in store for Brian as far as the recovery or just in general, but I will be here to fight for him, like I know we all have done in some way for our children to get them through this experience.
He ended up having to be delivered by c-section because I developed pre-eclampsia in the last days of the pregnancy and the doctor decided to get him out sooner since I was not even dilated or effaced. I was very scared but so happy to see him at last.
If I am 100% honest with myself I have to admit that I felt there was something "off"about how he looked from the get go. But he did not have an obvious ridge or a triangular shaped head at that point. He had kind of a cone shaped head, and from his very first appointment I started asking the pediatrician about it. Of course she shooed me away and told me it was just moulding from birth..("even though he was by c-section I thought?")
To complicate matters, at around 6-8 weeks I started noticing that Brian would only look to one side. His toys would all be on his right side...and here Brian would be, staring at a blank wall on his left. It wasn't normal and I just knew it. But when I took him to the DR they told me he didn't have torticollis (turns out later he did.) Because of the torticollis,his head flattened in the back...and this added to the oddness of the shape. I asked his pediatrician at 6 weeks, 3 months and 4 months about his head shape and she blew me off each time. One time she even told me : He has a NICE head shape!"
Finally at 5 months I demanded to go get a head scan since I thought what he needed was a helmet for plagiocephaly. So my pediatrician actually had the nerve to say "Oh Brian, your mom wants to make you a hair model!" I ignored her and took my referral to the scan place and the neurosurgeons office....where my life would change in a minute.
Turns out the flattening is not the issue the doctor told me when he saw Brian and proceeded to explain what Craniosynostosis is. I decided to get a second opinion because this first dr told me that he felt the procedure was only cosmetic and felt it was more important for girls! WHAT IS IT WITH THESE DOCTORS???
So I took us to Shands, a very well respected teaching hospital and met with the team there who rated Brian a 6-7 as far as severity. After discussing the surgery and risks we scheduled a date. The decision was painful for my husband and I because we felt like if we didn't do it one day he would look at us and say "why didn't you fix me?" but then if you do it, you run the risk of losing your baby and then we would never forgive ourselves. So it was very very hard.
But when the day came, it actually went much more smoothly than I thought it would and tomorrow will be a week since the surgery. I am not sure what the future has in store for Brian as far as the recovery or just in general, but I will be here to fight for him, like I know we all have done in some way for our children to get them through this experience.