Why hello there. I bet you thought I had abandoned you but I haven’t. The holidays are a busy time without adding even more stress to the equation so I have been as they say busy taking care of business. I missed you and don’t worry I’ll never leave you without at least first updating twitter to let you know.
Wait isn’t the title of this post “Science is Cranio Stupid??” and not “O How I Love My Audience, Let Me Count The Ways…” Yes, yes it is. Onto the subject at hand.
The other day I was in the midst of satisfying my toddlers need to represent himself and his family in a humerus holiday Jib Jab musical and when shuffling though Facebook pictures to “create a new head,” Charlie’s sonogram images came on the screen and something happened.
I looked closely and saw something I had never noticed before. Not the amazing little life which had grown inside of me but his head. was. deformed. at just 17 weeks in utero! The common theory that Charlie’s craniosynostosis of a single suture had been positional was now blown to bits.
You have got to be kidding me! Here it is again with an outline showing what we would come to know as sagittalsynostosis.
And this is Charlie at 4 months old. doesn’t that head shape look familiar… Again I have outlined it for those who otherwise would not know what to look for.
When I found out I was pregnant again with Van I was aware that there would be a 1 percent chance of him also being born with craniosynostosis and I was told by numerous doctors that there would be no way to determine if he did indeed have a fussed skull until after he was born. Our plan became the ever scientific wait and see approach. Wait and see if he is able to pass into the birth canal while I pray and curse my way through the tortures of labor.
I was told that the only way to “test” or “check” for craniosynostosis in the womb could be cancer forming as x-ray imaging is the only way to look at the bones and an ultrasound would be insufficient. Stupidity thy name is science. Indeed.
In school I never enjoyed the rigors of the science class. I frequently suffered bruises from boredom induced narcoleptic episodes while sitting in biology. I believe in logic and common sense and unfortunately it seems that science sits in constant contemplation of both of those things. I prefer my scientists in the form of 19th century philosophers rather than 21st century lab technicians. Modern day corporate science has brought us some wonderful things such as genetically modified foods and prescription medications, things which make us sick and maintain a certain aspect of “living” during times of disease. Billions of dollars going to disease research and no cures in sight. Sigh, I lament.
Money funds scientific research and when it comes to craniosynostosis, the only study I was able to find when confronted with Charlie’s diagnosis, was one on whether or not pre-natal alcohol use is a contributing factor in the fetal development of craniosynostosis. The study essentially declared that, no mom a glass of wine while pregnant will not fuse your child’s skull. Hooray! Consider that guilt relieved.
From my experience it appears as if the ob/gyns and pediatricians alike are completely ignorant when it comes to what might be considered a relatively common occurrence, 1 in every 2000-2500 live births. Charlie went undiagnosed for 4 months. When his head did not descend 1 inch in labor and delivery, the ob/gyn blamed me for my inability to birth my child. How could the pediatrician at the hospital not realize my son had no soft spot or simply that you could not see his soft spot pulsing to the beat of his heart like you would any healthy child? Why is craniosynostosis corrective surgery considered a purely cosmetic procedure, likened to a “boob job,” when the infant is completely unable to express whether or not this condition causes pain or retardation? Why are so many cranio kids and their parents struggling through developmental delays? Questions perhaps science could answer, if it felt like it and was sufficiently funded.
In the last month of pregnancy with Charlie I had a very strong intuition that something was “wrong.” I addressed my concerns to my ob/gyn and requested an ultrasound. To which I was denied. A week later I asked again. Denied. My fears were apparently of no consideration. My intuition is not science. I always believed that the ultrasound would not have actually made a difference since it would not have displayed the bones sans soft spot but now, over three years later, looking at Charlies sonogram and seeing his craniosynostosis at only 17 weeks I am not only angry with the inept physician but with the science that tells me my common sense, intuition, logic and eyes are mistaken when not backed up with testable explanations, studies and ultimately money. Had the ob/gyn been properly educated I may have been saved 45 hours of labor and gleefully skipped into a scheduled cesarean section as opposed to a hysterical emergent one. Que sera, sera.
If you have read my previous posts you would know that Van did indeed make his journey out through the birth canal and into this world and upon beginning what may inevitably be a life of comparisons, his ultrasound images show a perfectly shaped head. Regardless of whether or not science will back up my claims that an ultrasound can indeed show a knowledgeable doctor the probable outcome of craniosynostosis, I put forth that proposition to any and every parent whose child has shared Charlies diagnoses to look at those early images of their children again and tell me if my hypothesis is right or wrong or do my eyes deceive me.
and by the way here is the video that sparked it all…