Learning about torticollis and plagiocephaly in my newborn was something I never thought I’d have happen when I first was pregnant. I had never heard of them until I started asking questions at the doctor’s office when I noticed some strange things in my daughter after we brought her home.
Our Story
Within a week after bringing Evelyn home from the hospital, I noticed that her head was tilting. I’d re-arrange it and slowly it would tip again.
I brought it up to our physician who initially thought that she’d grow out of it. After about a month of her not getting better with us re-arranging her, it was clear we needed more help.
In addition to her constant tilt, she was now developing an odd-shaped head, from always having her head turned to the left.
When Evelyn was 1 month old, we were referred to the “Birth to 3” program. This program is the early intervention program to assist children who might be having delays.
They came to the house to examine Evelyn and see how she was developing. This consisted of them observing her as she moved in various positions. After taking many notes, they determined that she was not delayed enough to officially be admitted into their program.
They were able did show me several stretches and holds that I needed to do on her to help with the torticollis. From there, we could fix the tilting of her head at home, and in theory, the plagiocephaly would also fix itself as she grew.
Unfortunately, the stretches and us trying to keep her off her head did not fix the plagiocephaly. We ended up doing helmet therapy.
We went in around 3 months of age to get measured and see if a helmet would help. When our daughter was almost 5 months old, we had officially started helmet therapy.
She remained in the helmet until she was around 9 months old when her head was looking significantly better.
What is Torticollis?
Torticollis is when muscles in part of the neck are too tight or shortened. This leads to some of the neck muscles becoming very strong while others become weak.
For Evelyn, her head both turned to the left and also tipped down toward her left shoulder.
However, in others, it could be a tilt to the right or a tilt down toward the right shoulder.
Where Does Torticollis Come From?
Per Web MD, some babies develop torticollis because they are too cramped in the womb or been in a strange position that puts extra pressure on parts of their head.
Web MD also notes that if a forceps or vacuum was used during delivery it could cause torticollis. The tools are another way that extra pressure could have been put on the baby’s neck muscles.
I did have a vacuum used while delivering my daughter, which could be the reason that she developed tightened neck muscles.
How to Treat Torticollis?
Depending on the severity of the torticollis as your baby grows, will depend on the treatment plan you develop.
In our case, we were able to resolve the torticollis with simple at-home stretches and activities as my daughter grew.
The stretches loosened up those tightened muscles on her left side and strengthening the muscles on her right side.
Here are examples of the at-home stretches and activities that can help with torticollis:
- Tummy Time – 10-15 minutes 3 times per day.
- Playtime on the back where the baby reaches above them.
- Use a toy or have them follow your face from the favored side to the unfavored side.
- The football carry – put the baby on your arm with the side that they tend to tilt to.
- Side laying playtime – have your baby play with toys while they lay on their side.
- Trunk stretch – While the baby is laying on their back, bring their hips toward their non-favored side.
- Lateral neck tilt – While holding the shoulder on the baby’s favored side, gently tilt their head towards their non-favored shoulder.
- Alternate which arm you hold the baby in while feeding them. This will force them to look each way with their head.
Next Steps if At Home Stretches Aren’t Enough
If at-home stretches don’t seem to be helping enough, going to a physical therapist (PT) is the next step. The PT will be able to do the stretches in the office and teach you more stretches to help at home.
While we didn’t use a PT, it may have been nice to have done so. I noticed that each time our daughter hit a milestone – sitting, crawling, walking, her head tilt came back a little bit.
I was able to keep using the stretches we learned to help with the setbacks. There are more stretches you can learn once your baby is sitting and has more head control.
In severe cases of torticollis, there is a surgical option where the tightened muscles can be lengthened.
What Happens if Torticollis is left Untreated?
Torticollis can cause other problems if left untreated, including plagiocephaly. According to Web MD, other impacts could be developmental delays with sitting and walking, less tracking with their eyes, balance problems, limited reach, and rolling only to one side.
Another possibility of leaving torticollis untreated is that the baby may have hip problems and possibly develop a curve in their spine from it.
What is Plagiocephaly?
Plagiocephaly is more commonly known as “flat head syndrome”. It is when over time, an infant develops flat spots on a portion of their head or over the whole back of their head. You can see in the picture below how the left side of my daughter’s head is flatter than the right side.
This Cranial Tech website provides some good pictures of what plagiocephaly can look like. Cranial Tech is one vendor option for finding helmets.
Another option, which is the one we had done, is Hanger Clinic. Their website also provides a different perspective and overview along with some good FAQ’s.
Where does Plagiocephaly come from?
According to the American Association of Neurological Surgeons, some babies are born with it whereas others develop it over time.
The babies who are born with it tend to be multiples since they are so cramped in the womb.
Babies who have a preference about which side of their head they sleep on also tend to develop it. This means that babies with torticollis are more likely to develop a flat head.
Our daughter was an excellent sleeper. She always slept with her head turned towards her left side, which is the side her flat spot developed on.
How to Treat Plagiocephaly?
There are ways to prevent plagiocephaly or even treat it at home before needing to progress to helmet therapy.
Tummy Time
Once the umbilical cord falls off, babies should start getting 3-5 minutes of tummy time each day. This should work up to 10-15 minutes of tummy time at least three times per day.
Tummy time helps strengthen muscles and takes the pressure off the back of the head to help prevent flattening.
My daughter hated tummy time, so we had a hard time getting this in. Thankfully, we received some additional ideas on how to get it in from the PT.
- Put baby tummy-side down on your chest
- Lay baby over your lap to burp
- Face your baby while lying on the floor
- Put a rolled towel under the baby’s arms for additional support
- Provide colorful or musical toys in front of them
- Put a mirror in front of them
- When they are old enough, carry them “airplane” style with their tummy’s down
Limit the Use of Infant Equipment
Infant equipment can put pressure on the back and side of a baby’s head. Limit the amount of time the baby is in swings, strollers, and car seats to alleviate that pressure.
Instead of using infant equipment, consider carrying your baby around in an upright carrier. This will keep pressure off the baby’s head while allowing them to look around and feel close to you.
Positioning the Baby
We did a lot of re-positioning with our daughter when she was younger to try and get her head to face in a different direction than her preferred side.
This included alternating arms while feeding her. This made sure the pressure was on a different side of her head each time.
When they go to sleep, alternate the position of their head so it faces a different direction each time. This includes putting the baby’s head toward a different end of the crib at night for sleeping.
Helmet Therapy
If you find that the above options aren’t getting the results you want, you can see if your baby qualifies for a helmet.
One major item to consider when considering helmet therapy is the cost. A lot of insurance companies will not cover the cost of the helmet and they can be very pricey.
The other thing to consider when looking at helmet therapy is that there are two kinds of helmets. One option is the “passive kind” that helps shape your baby’s head as they grow.
The other option is an “active” helmet which puts pressure on certain parts of the head to help re-shape it.
Helmet therapy can be a long haul. It starts by slowly getting your baby used to the helmet by having them wear it an increasing number of hours each day. The goal is to get the baby up to wearing the helmet around 23 hours per day, with a few breaks during the day.
Helmet Care
The helmets need to be washed each day. The method used to wash it will vary depending on what brand of helmet you get.
Ours was able to be washed out every day with baby soap on a rag. We also had to wash the outside of the helmet often once our daughter started eating solid foods.
Lesser Known Facts About Helmets
You need to watch your baby’s head to make sure they do not develop any red areas or itchy patches. If this occurs, you will need to call the helmet provider to determine proper care.
Helmets get stinky, especially in warmer temperatures. This is the reason they need to be cleaned so often.
If your baby gets a fever, you will need to take the helmet off. The helmet (at least our helmet) was made of a material that would keep all that heat in, which isn’t good. Once your baby’s temperature is back to normal, the helmet can go back on.
The fun part about the helmets is that they come in many colors and patterns. If you don’t want just a plain helmet, there are sticker decals you can get.
We got our helmet stickers from Bling Your Band. They have a wide range of options for stickers there that you can decorate the helmet with.
I have heard that other options are to get the helmet wrapped and or painted.
What if Plagiocephaly is left untreated?
Depending on how bad the flat head it, will depend on what happens if the baby is left untreated. On the Facebook support groups I am a part of, many people have chosen not to treat it without many follow up issues.
However, according to Children’s National if it is Congenital Plagiocephaly with craniosynostosis it could potentially cause other issues such as increased pressure in the head, seizures, and developmental delay.
Emotions Going Through Treatment for Torticollis and Plagiocephaly
Going through treatment for torticollis and plagiocephaly is worse for parents than it is for the babies.
Babies are easily adaptable and can get used to any situation pretty quickly.
However, having to constantly do stretches or see your child’s misshaped head can wreak havoc on a parent’s emotional state.
Personally, when we were going through this phase, I remember feeling so guilty about it all the time.
Guilt
The guilt had many forms, but mainly I always felt like I wasn’t doing enough for her as we went through treatment.
Evelyn hated doing the stretches for torticollis and would cry the whole time, so I felt bad about that. Then at the end of the day, if I hadn’t done the maximum number of stretches throughout the day, I’d be left feeling guilty that I hadn’t done as much as possible to help her.
Every time I looked down at her misshapen head, I’d feel like I wasn’t doing enough to keep her off of it. I felt like I could have held her more that day.
In reality, I was holding her a lot and keeping her off of it a ton. She’d slept through the night since she was 6 weeks old, which was a long time to have pressure on her head.
If we didn’t get the maximum amount of tummy time, I’d have trouble sleeping that night, because that feeling of guilt would set in.
Be Kind to Yourself
What I didn’t see at the time, and I wish I could have told myself then, was that I was doing the best I could at the time and everything would turn out okay.
Had I not put endless pressure on myself to exceed and be perfect with the stretches, tummy time, and keeping her off the head, I would have been able to enjoy those months with her that much more.
Opinions of Others
Another difficult aspect of going through treatment for torticollis or more specifically plagiocephaly is having to hear all the opinions of others.
When we started talking about having to do helmet therapy, we had to hear all the thoughts of our relatives. Most of them didn’t think having an odd-shaped head would be a problem. They voiced their disagreement in getting our daughter a helmet.
One of the biggest comments we heard was, “She’ll have hair, it no one will be able to tell!”
Hearing all the dissent was a large struggle for us. We just stuck to our initial decision and told our relatives that this was what we were going to do because it was what we felt was best for our daughter.
I didn’t care if her hair would hide her funny shaped head, I didn’t want her to feel self-conscious about it later in life.
Thankfully, we didn’t get too many comments on the helmet from strangers while we were out in public. If we had though, it would have been easy enough to explain we were fixing her head shape.
Many of the stickers available for helmets state something like “Fixing my flat”, which pretty much explains what the helmet is for.
Going Through Treatment for Torticollis and Plagiocephaly with Your Baby
Going through treatment for torticollis and plagiocephaly with your baby is a very stressful time.
Stressful in that there is a lot to remember to do, with stretches and doctor’s appointments.
One aspect that helped us go through our days of treatment was to hang a list next to our changing table to remind us to do the exercises.
It takes a real team of two to remember to keep up with everything that torticollis and plagiocephaly involves. This is where having a strong relationship with your partner and good communication skills would come in – to help navigate all the chaos.
Make sure you take care of yourself as you navigate the difficult path of treating torticollis and plagiocephaly. Remember to be kind to yourself and that you are doing the best you can.
Typically, the treatment for torticollis and plagiocephaly is such a short time over the grand scheme of things.
Try not to get too caught up in what a big impact the helmet may have on your child’s life because I can tell you, two years later, that it is a small bit in time. Plus, seeing the progress they make over the course of time, is very rewarding.
Below are the scans of our daughter’s head to show the progress she made while wearing the helmet.
Also remember, that you are your child’s best advocate. If you think something is off, keep pushing until you get the issue resolved.
You will get through this, together.
