The Scoop on Torticollis & Plagiocephaly Helmeting
You are either reading this post because you are subscribed to our blog or you are a family member or friend that we directed here to learn more about this topic.
Let's get a few terms defined before we go into this.
Torticollis: Also known as wry neck or loxia is a symptom defined by an abnormal, asymmetrical neck position which may be due to various causes.
Plagiocephaly: Also known as flat head syndrome is a condition characterized
by an asymmetrical distortion (flattening of one side) of the skull.
We didn't share with too many the struggles surrounding our pregnancy with Emma. She was so excited to meet us all that she kept trying to come early. Because of this, she was down very low in my pelvis for the 3 months leading up to her birth while I was on full-time bed rest. That paired with a very traumatic birth (23 hour labor and delivered finally with vacuum extraction) caused her to be born with congenital muscular torticollis. Simply stated, there was damage to the right sternocleidomastoid muscle in her neck which causes her head to tilt right and rotate toward the opposite side.
In addition to that, she was born with a flat spot on the left back side of her head from being against my pelvis. Because of the torticollis, she favored looking to her left when she slept and rested because it was more comfortable. Think about when you wake up in the morning after sleeping wrong and you have a kink in your neck - this is what it felt like every day for Emma.
We began stretches and strengthening exercises when she was just a few days old, I wore her (moby wrap) at every opportunity so she was not on her back with pressure against her head. We started tummy time right away and she surprisingly loved it, but despite our best efforts, we couldn't prevent the flattening from worsening. It is typical that you find torticollis and plagiocephaly hand in hand because they continue to feed off one another. The neck is more comfortable in one position, which causes the head to flatten, the head then naturally rolls to the flattened side, which allows the neck to rest in the comfortable position.
Emma began physical therapy every other week at 4 months old. Her and I have done stretches and exercises together every day for the last 6 months. She is doing absolutely amazing and the strength in her neck should be 100% soon. However, even though her torticollis is improving, about a month ago our PT recommended that we see a specialist to get a scan of Emma's skull to see how drastic the asymmetry truly was. It has dramatically improved from when she was younger and my heart was sickly anxious waiting for our appointment. They found her head has a 10MM difference, which is considered mild, but they still recommended cranial remolding orthosis, just a fancy term for helmeting.
Here you can see her amazing progression over the months. Her head is almost completely centered now as her muscles strengthen and lengthen. :)
I would be lying if I said that this was an easy decision. We left her appointment that day quiet and complacent. Bryan went back to work and I came home with Emma. I cried a lot and went back and forth about what the "right choice" would be. Our hearts battled some very serious conflict and despite my knowledge that I have done everything within my power to correct this issue with therapy, I still felt (and still feel) an overwhelming amount of guilt and responsibility. I wish there was something else I could have done... I wish that I could wear the helmet in her place.
I praise God that she has no serious medical issues, she is brilliant and is learning, sitting and crawling with advanced speed. For Emma, this is strictly cosmetic which is what made this decision even harder. She is a healthy, strong, happy and amazing little girl and helmeting in this case would simply be to help her skull shape develop with more symmetry.
When faced with the decision, the options were to do nothing and hope that it would round out since she is now crawling and tummy sleeping and once her hair came in that you would never even be able to tell. (I couldn't tell you for certain that I don't have a goofy head shape under my hair!) Or, we do what we could to get the best results so that we never had to live with the guilt of doing nothing when we had the chance.
The only reasons that I could land on for not doing it were for selfish reasons, for unimportant reasons. I was terrified thinking about the looks she would get from strangers who didn't understand and I was paralyzed thinking that others would conclude that something was wrong with her. It is sickening to write out and I cry now even typing this, but she is my world and I would do anything to protect her. I finally settled on this simple thought. If Emma would have been born with a medical condition that affected her mental capacity or put limits on her physically, would I care what other people thought? Absolutely not, because she would still be the most perfect little girl in my eyes. So in turn, what does it matter to me what others think? It doesn't.
I look at it like braces. I had braces growing up to straighten my teeth - there was no medical need for this, simply cosmetic, but I am grateful my parents gave me that option because I love my teeth now.
This Thursday, (9/5) we are going in to get her helmet fitted and the journey begins. The doctor anticipates only 3-4 months of this therapy before we can see the results we were looking for. This is a very short amount of time in the grand scheme of things and our hearts have peace now knowing that we are choosing to do something instead of nothing. She will have to wear it 23 hours a day, taking it off for one hour during bath time and to clean and sanitize it. We will ease into it over the first week and I will do my best to keep updates on our progress on our blog.
This is what the helmets look like and we chose the pale pink, like in this photo, for Emma.
Here is a link about helmeting: http://www.hanger.com/orthotics/services/plagiocephaly/Pages/default.aspx
We are confident we have made the right choice for us and are grateful for the love and support from all of you.
God Bless,
This Family Stone
Let's get a few terms defined before we go into this.
Torticollis: Also known as wry neck or loxia is a symptom defined by an abnormal, asymmetrical neck position which may be due to various causes.
Plagiocephaly: Also known as flat head syndrome is a condition characterized
by an asymmetrical distortion (flattening of one side) of the skull.
We didn't share with too many the struggles surrounding our pregnancy with Emma. She was so excited to meet us all that she kept trying to come early. Because of this, she was down very low in my pelvis for the 3 months leading up to her birth while I was on full-time bed rest. That paired with a very traumatic birth (23 hour labor and delivered finally with vacuum extraction) caused her to be born with congenital muscular torticollis. Simply stated, there was damage to the right sternocleidomastoid muscle in her neck which causes her head to tilt right and rotate toward the opposite side.
In addition to that, she was born with a flat spot on the left back side of her head from being against my pelvis. Because of the torticollis, she favored looking to her left when she slept and rested because it was more comfortable. Think about when you wake up in the morning after sleeping wrong and you have a kink in your neck - this is what it felt like every day for Emma.
We began stretches and strengthening exercises when she was just a few days old, I wore her (moby wrap) at every opportunity so she was not on her back with pressure against her head. We started tummy time right away and she surprisingly loved it, but despite our best efforts, we couldn't prevent the flattening from worsening. It is typical that you find torticollis and plagiocephaly hand in hand because they continue to feed off one another. The neck is more comfortable in one position, which causes the head to flatten, the head then naturally rolls to the flattened side, which allows the neck to rest in the comfortable position.
Emma began physical therapy every other week at 4 months old. Her and I have done stretches and exercises together every day for the last 6 months. She is doing absolutely amazing and the strength in her neck should be 100% soon. However, even though her torticollis is improving, about a month ago our PT recommended that we see a specialist to get a scan of Emma's skull to see how drastic the asymmetry truly was. It has dramatically improved from when she was younger and my heart was sickly anxious waiting for our appointment. They found her head has a 10MM difference, which is considered mild, but they still recommended cranial remolding orthosis, just a fancy term for helmeting.
Here you can see her amazing progression over the months. Her head is almost completely centered now as her muscles strengthen and lengthen. :)
I would be lying if I said that this was an easy decision. We left her appointment that day quiet and complacent. Bryan went back to work and I came home with Emma. I cried a lot and went back and forth about what the "right choice" would be. Our hearts battled some very serious conflict and despite my knowledge that I have done everything within my power to correct this issue with therapy, I still felt (and still feel) an overwhelming amount of guilt and responsibility. I wish there was something else I could have done... I wish that I could wear the helmet in her place.
I praise God that she has no serious medical issues, she is brilliant and is learning, sitting and crawling with advanced speed. For Emma, this is strictly cosmetic which is what made this decision even harder. She is a healthy, strong, happy and amazing little girl and helmeting in this case would simply be to help her skull shape develop with more symmetry.
When faced with the decision, the options were to do nothing and hope that it would round out since she is now crawling and tummy sleeping and once her hair came in that you would never even be able to tell. (I couldn't tell you for certain that I don't have a goofy head shape under my hair!) Or, we do what we could to get the best results so that we never had to live with the guilt of doing nothing when we had the chance.
The only reasons that I could land on for not doing it were for selfish reasons, for unimportant reasons. I was terrified thinking about the looks she would get from strangers who didn't understand and I was paralyzed thinking that others would conclude that something was wrong with her. It is sickening to write out and I cry now even typing this, but she is my world and I would do anything to protect her. I finally settled on this simple thought. If Emma would have been born with a medical condition that affected her mental capacity or put limits on her physically, would I care what other people thought? Absolutely not, because she would still be the most perfect little girl in my eyes. So in turn, what does it matter to me what others think? It doesn't.
I look at it like braces. I had braces growing up to straighten my teeth - there was no medical need for this, simply cosmetic, but I am grateful my parents gave me that option because I love my teeth now.
This Thursday, (9/5) we are going in to get her helmet fitted and the journey begins. The doctor anticipates only 3-4 months of this therapy before we can see the results we were looking for. This is a very short amount of time in the grand scheme of things and our hearts have peace now knowing that we are choosing to do something instead of nothing. She will have to wear it 23 hours a day, taking it off for one hour during bath time and to clean and sanitize it. We will ease into it over the first week and I will do my best to keep updates on our progress on our blog.
This is what the helmets look like and we chose the pale pink, like in this photo, for Emma.
{While this baby is darling, this is not Emma Sue. Just a sample of the helmet color.}
Here is a link about helmeting: http://www.hanger.com/orthotics/services/plagiocephaly/Pages/default.aspx
We are confident we have made the right choice for us and are grateful for the love and support from all of you.
God Bless,
This Family Stone
Lots of love and hugs. You're such wonderful parents!
ReplyDelete