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Date of last update: 9/9/2017.

Forum Name: Pediatric Topics

Question: Congenital Torticollis

 AmandaJaie - Sat Aug 30, 2008 4:33 pm

I am a 26 year old woman who was born with a severe case of congenital torticollis. I am considering having a child. I know that there are many possible birth defects that should--and do--concern me, but given my personal history with this one, I consider it to be especially of concern. I would like information regarding whether my baby would be at an increased risk for the condition.

I realize that the condition is not as extreme as it was then. In 1982, the year of my birth and of the diagnosis, the doctors told my parents that I would have to have surgery to correct the condition. They said that if I didn't, I would suffer "irreversible visual and neurological impairment, the extent to which we can't even begin to predict." Terrifying for first-time parents, but that wasn't even the worst of it. They also told my parents that the surgery had a 50/50 chance of quadrapalegia. My parents took me to multiple doctors and received similar prognoses.

Then, my father's chiropractor said to bring me in and just give him a chance. He worked with me, doing many of the stretching exercises that have since become a standard treatment for congenital torticollis. Within three months, I showed a noticeable improvement. I never had the surgery. Today, I would have to go to the attic to look at my baby pictures to even know which side the condition was on.

So you see, the condition is a concern for me. I have tried to find the causes. Either there are different theories, or there are different causes: the muscle in the neck develops too short, not enough space inutero for proper growth, injuries during childbirth.

Could the condition be genetic? Would the baby be more likely to have it because I did? If it makes any difference, my body-type is very, very similar to my mother's. Could having this body-type put the baby at greater risk? Are there steps I can take to reduce the chances of the child having this condition?

Any insight you may be able to offer would be greatly appreciated.
 Dr. Chan Lowe - Mon Sep 08, 2008 5:42 pm

User avatar Hello AmandaJaie,

This is a great question that is currently still being investigated. The cause of congenital muscular torticollis is as of yet unknown. The heredity issue is also not well know. There has been some case studies that are potentially suggesting an autosomal dominant pattern of heredity (meaning a 50% chance that a child of an affected parent would have the condition); however, this is far from being verified as true. I suspect the issue actually will be a more complicated method of inheritance rather than a straight forward 50/50 chance.

Most cases of congenital torticollis are easily treated with stretching and exercises at this point although there are less commonly cases where muscle lengthening is needed.

Best wishes.

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