Jacob has Infant Congenital Torticollis. Torticollis is:
“…a condition which affects the sternocleidomastoid muscle which connects the base of the skull to the collar bone. This muscle is the main muscle that is used to move the head from side to side. In an infant with Torticollis, the muscle is shorter on the side that the head is tilted to. With treatment, the muscle will grow and stretch; but if left untreated the condition may cause a permanent limitation of the infant's neck movement. If action is not taken, the infant's head may flatten on one side and the face may become mis-formed.”
The most common theory as to the cause of torticollis in infants is due to limited space and movement in the womb, or a traumatic birth. Jacob’s head, as you can see in pictures, is tilted to the right side. He literally has a crick in his neck! Jacob does have a slight flattening of the head on his right side and in x-rays, it appears that Jacob’s right jaw is growing slower than his left. This is due to his Right Side Torticollis. Just for the record, although Jacob was not pleased about having to get x-rays and an ultrasound of his neck...he was such a champ!!
Congenital Torticollis is not a permanent condition and can be treated. In mild cases, it can be treated with daily stretches in the home, and in more moderate cases, intense PT. In more serious conditions (which we do not believe Jacob has), surgery is required. Jacob is not in any pain from this condition….except when we do his stretches…he is not a fan of the stretches...unless he's sleeping, and then he doesn't seem to notice! 
But when he's not sleeping....Watch out!
But when he's not sleeping....Watch out!
Since Jacob was born, we, with the guidance of our pediatrician, have been trying to help him stretch and turn his neck the opposite way to look at us or toys, as well as to eat. At Jacob’s six month mark, we did not see any improvement, so we worked with the Physical Therapist here on Misawa Air Base. Unfortunately the Physical Therapists here are not experts in pediatric physical therapy, and it became clear that Jacob was going to need more attention.
So, that’s where we are now. Jacob is being Med Evac-ed (sounds fancy, doesn’t it) out of Misawa and back to the US to get the proper care and treatment he needs. Jacob and I will be staying in Columbus, Ohio with my parents and working with the PT Team at Nationwide Children’s Hospital. Our pediatrician thinks that it will take 2-3 months of therapy and treatment to correct the condition. We are working very hard to get the paperwork, referrals, and scheduling complete so we can get to the States as soon as possible. (Although we will miss the most beautiful time of year in Japan....Cherry Blossoms!!!) 
Unfortunately, Jason will not be able to join Jacob and I for this adventure. We will miss him and I know he is going to miss Jacob terribly. Good news is that we had already planned to come back to the States in May for a conference and my sister’s wedding, so Jason will get to see Jacob for the month of May, which will help break up the separation. We hope to have Jacob in tip-top shape to make it back to Japan to be home for Jacob’s 1st Birthday.
We should know early next week when we will be traveling. I will of course leave all the info in another post as soon as we know. We will keep you updated with Jacob’s progress and maybe we will get to see some of you while we are in the States!For more information, you can search Infant Torticollis or check out:
6 comments:
I don’t know what Jacob is eating in the sixth picture down, but I hope you don’t plan to let him eat that while he is here…it looks very messy…
Can’t wait to see you!
<3 aunt bridge
Please know I will be praying for safe travels and Little Mr. Jacob. If there is anything I can do while you are in the states - just say the word! Love, Heather
I just happened to stumble across your blog in researching this for my cousin's baby. I wanted to add that massage therapy may be very beneficial in addition to the stretches you are doing with your son. I am a massage therapist, and I highly recommend looking in your area for a trusted and experienced one to consult. Your PT may have even suggested this, and I'd be surprised if they had not. You may even find a massage therapist who specializes in infant massage. As far as I know, we cannot work on infants unless specialized, and even so we would show you the massage techniques to help release the sternomastoid and trap muscles responsible for shortening the side of the neck. If you need more information, please feel free to drop me an e-mail: jenny@milagrosdayspa.com.
Best of luck!
-Jenny
I was doing some research on Torticollis for my six month old son and I happened to come across your sons story. It has helped me to better understand this condition. My son, Jaxon, has yet to be diagnosed with this condition. For a few months now my husband and I, as well as a few other family members, have noticed Jaxon having a slight tilt on the left side of his head. He is due to have a six month check up next week and I plan to bring up the subject to his pediatrition. When Jaxon is laying down I can't seem to notice his head tilt. Thank you for this blog, it has really helped me. Best of luck to you, your handsom son, and the rest of your family.
Thanks again,
Jennifer H.
Arkansas
Hi,
I came across your blog looking for answers for my not quite 2 month old son. So far, your son's story appears identical to mine. My son't head tilts to the left and he has some flattening of his left cheek. His pediatrician diagnosed him with congenital torticollis. I am very interested in hearing an update to your son. Has the PT remedied his head tilt? Can they do anything for the mild flattening of his cheek or lengthen his jaw? Thank you so much for your blog. It has really helped me.
Marcelle
California
My son, now almost 4 months also has a left tilt. To answer some questions, helmets are very useful to help w/ jaw and head malformations.
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