After almost a year, I am finally sharing our journey with torticollis. I am sharing because, as we’ve travelled on this journey, I’ve had such a hard time finding others who can relate with my daughter’s story. Between the endless googling, the forums, the Facebook groups, and the doctor appointments, I could never seem to find someone who could give me reassurance. Sure, there were plenty of people in the trenches like us, but I desperately wished someone could just tell me that they had been where we were once, and that they had come out victorious on the other side. I wanted encouragement. I wanted hope.
Because even though 1 in 250 babies has torticollis, the condition still seems to be this mysterious black hole. No one can give you straight-forward answers or guarantee it will get better. And there is nothing more frustrating as a parent than wanting so badly to help your child, but not knowing how to.
So, that’s why I’m writing this. To tell you that we were where you are once, and that we have come out on the other side! To tell parents who are desperately trying to understand this condition that you are not alone, and that your efforts aren’t in vain. I’m here to encourage you to keep on fighting the good fight. I’m here to give you hope.
So, here is our story…
Looking back, we realized that we first noticed my daughter’s torticollis the day we brought her home from the hospital. At the time, we didn’t know that it was an actual condition nor did we realize that anything was wrong. We just assumed that, like all babies, her overall scrunchiness was a result of her recent departure from the tight quarters in my belly, and didn’t think anything of the way her head seemed to be constantly tilted to her left side.
But after about a week at home with “T”, we started to notice that she always seemed to have her head tilted, even when laying flat on her back. As a matter of fact, we had never seen her straighten out her head. And it was at her 2-week appointment that our pediatrician informed us that we needed to keep an eye on her, because of this mysterious torti-blah-blah that we had never even heard of.
So, that’s what we did. And sure enough, her neck stayed tight. So, we desperately scoured the internet to try and learn more. And despite trying to convince ourselves that there was nothing wrong, we realized that our baby fit all the descriptions. She had torticollis, and it wasn’t something that was just going to go away on it’s own.
For those unfamiliar with the condition, here is what we learned (info from orthoinfo.aaos.org):
“Congenital muscular torticollis, also called twisted neck or wryneck, is a condition in which an infant holds his or her head tilted to one side and has difficulty turning the head. In congenital torticollis, the muscle that extends down the side of the neck – the sternocleidomastoid muscle — is tight and shortened…The cause of congenital muscular torticollis is unknown, however, it may be related to abnormal positioning (breech position, for example) or “crowding” of the baby while in the uterus. This results in an injury to the neck muscle that scars as it heals. The amount of scar in the muscle determines how tight the muscle is.”
In our case, our daughter was likely scrunched up in my belly with her head cranked to one side for so long, that it affected the development of her left sternocleidomastoid muscle. And, as a result, we were going to have to take action to avoid abnormal head growth, delayed motor skill development, and issues with her balance that could escalate into larger issues regarding her ability to eat, write, and function normally. We learned that, if left untreated, torticollis could affect many basic tasks that most don’t even have to think about because of their ability to hold their head straight in mid-line.
And so, our journey began.
At 2 months old, our baby was officially diagnosed, and we started taking her to physical therapy. We learned stretches and exercises we would need to do at home with her, and we started stretching her 10-12 times a day. Our physical therapist was happy with our commitment to help her, and told us that she expected her to have full range of motion within 3-6 months, or by the time she became mobile.
At 3 months old, and after much debate, we started taking T to the chiropractor once a week in addition to her weekly physical therapy appointments. We had heard of so many others pursuing this type of treatment, and knew we wanted to do everything in our power to resolve the problem.
At 4 months old, despite feeling like I was spending all day every day stretching my child and obsessing over her head positioning, I had yet to see T straighten her head and tip it the opposite direction on her own. Our physical therapist started using kinesio tape to try and stimulate the muscles on the right side of her neck, with minimal results. So, due to the lack of results we were seeing from either PT or the chiropractor, our pediatrician recommended that we start ruling out any potential underlying problems that could be causing the torticollis.
So, that’s what we did.
We took T to an opthalmologist to rule out any vision problems, and were told that her vision was perfect. We also took her to a craniofacial and plastic surgery specialist who assessed her head shape and growth. We were relieved to find out that, despite her constant tilt, she had minimal plagiocephaly, and would not need to wear a helmet. They also told us that we shouldn’t be concerned about any other underlying issues and should just continue with her PT. So on we trudged.
At 8 months old, despite the fact that she had been crawling for 2 months, T’s symptoms were not gone and we started to get extremely tired and frustrated. Our physical therapist had told us that she should have been healed by this point and had nothing new for us to try. The specialists had no answers for us and we had spent the majority of our baby’s life doing exercises and taking her to appointments instead of snuggling and enjoying our time with her. We felt stuck and impatient. And on top of it all, her tilt was still so strong at times that it seemed like all of our efforts had been for nothing.
We continued to search for help and answers, but it seemed like everyone was just telling us to try all of the same things we had already tried.
At 10 months old, it was getting harder and harder to stretch T as she continued to get stronger and more independent. Her lack of improvement had us worried sick that she had some sort of deeper, scarier issue causing the persistence of this condition, and that no one was trying hard enough to find it. And most of all, we were worried that she would need surgery. That’s when we took her to another craniofacial specialist to get a second opinion.
By this time, T was almost 11 months old, and to our amazement, we finally heard some good news. We were relieved to hear that, although her neck was still tight, her torticollis seemed to be affecting her minimally. The doctor confirmed that she had no underlying health issues, but asked us to come back on her first birthday for a final decision regarding surgery. It was in that moment, that I realized just how far we had come. No, her tilt was not completely gone, but it was nothing compared to those early days.
And now, looking back over the past year, I realize just how much progress T has made. Although she still has a slight tilt, most would never even guess that there was ever anything wrong. I am not quite sure what it was that helped in the end, or whether it was just a combination of our efforts, her own strength, and most of all, patience.
What I do know is that this journey has been trying. There were days where I would put T down for a nap, and lay down on my bed and cry. I would cry out of frustration, out of confusion, and out of feelings of pure helplessness. I would ask God why we had to go through this, and beg him to just heal our baby’s neck so that I could be a normal mom. All I wanted was to take my baby for a walk in her stroller or play with her on the floor without worrying every second about adjusting her head, and whether or not I was doing enough for her.
But then, I would remember.
I would remember that although this condition was frustrating, I still had a healthy, happy, and thriving child. And when I didn’t wake up to a baby whose neck had been miraculously healed, despite my pleas, I would remember that God is more interested in building our character than in arranging our circumstances.
Even though I didn’t want to admit it, I knew that God was using this experience to refine my mothering, my patience, and my ability to give up my sense of control and trust him with everything, even my daughter. Because as much as I love her, He loves her more.
Today, T is almost a year old, and a week from today we have our final appointment. Our doctor will determine whether or not she needs surgery to correct her remaining minor tilt, or if we can say goodbye to torticollis forever and move on with our lives. So, even though this journey might not be over just yet, we are thankful for the way God has used this to build our character, and we know that she is perfect.
[Read Part 2 of our journey HERE]