Skip to main content
Flat Head Syndrome Torticollis

Flat Head Syndrome & Torticollis: Ethan’s Journey Part II

In this blog post I’m going to share with you the rollercoaster ride we’ve been on from discovering Flat Head Syndrome / Plagiocephaly and Torticollis in my son, Ethan, to finally finding the correct answers and the amazing specialists who have helped us through this journey.

*** To read Part I: “A Real Insight Into My Pregnancy & Birth Of Ethan”, CLICK HERE

Our lives officially began as a family of 4 when we arrived home from the Family Birth Centre in Perth, 7 hours after giving birth to Ethan. It was not overwhelming for me; I was very excited and prepared for the important first few days. The lovely allocated midwife who followed me through my pregnancy came to our house every day for 7 days to assess Ethan after birth and to make sure everything had established correctly in terms of feeding, weight gain, sleeping etc. Again, no complications. My body healed very quickly which I am so grateful for and I was coping well with the demands of both a newborn and toddler.

The first two months went really well in terms of Ethan’s health and development until one night I was observing his head, I suddenly had waves of anxiety running through me. There was a noticeable flat spot that alarmed me. It alarmed me because Ivanka had a flat spot but not to the degree I saw with Ethan’s. I took him to a physiotherapist out of desperation and got in the next morning. Although I do believe this lady knew what she was doing in terms of positioning a baby, I didn’t get a real sense that she wanted to help long term and properly assess the situation that was going on. I was disappointed and did not go back to her. The only outcome of this appointment was a referral to a Craniofacial Specialist to eliminate a condition called Craniosynostosis, a condition in which a baby’s skill prematurely fuses, changing the skull’s growth and resulting in a misshapen head.

Flat Head Syndrome Perth – Plagiocephaly – Torticollis

After the specialist assessed Ethan’s head, we were told he was fine. Specifically, Ethan just had something called Deformational Plagiocephaly – Type 1. The better way to describe that is a misshapen or asymmetrical head shape that occurs from too much external pressure on a specific spot of the head. As a baby’s head is thin and flexible it is easy and common for the shape to change easily and flatten. He recommended we purchase a SleepCurve mattress, which is designed to prevent and possibly treat Flat Head Syndrome (Plagiocephaly) in babies. The mattress has a curve where the head lays, which alleviates pressure and provides more room to move in comparison to a regular flat mattress.

The specialist said that this mattress would provide the same results as another form of treatment called a ‘Cranial Remolding Helmet’. This particular treatment requires a baby to wear a hard plastic/foam helmet 23 hours a day to allow the head to reshape by providing free space in the helmet where there are flat spots and targeting protruding areas by putting pressure on them. Combined, the head will essentially go back into shape over a course of a few months. We were not ready to go down that course and if it was something we could avoid that was our aim, so we went with the SleepCurve mattress that we purchased online from their website and it was delivered within 3 days to Australia from the UK. We payed just short of $250AUD for the product and shipping.

A month went by and I honestly thought that I had noticed a difference in Ethan’s head shape. Maybe because I so desperately wanted to or perhaps it was just his mop of hair hiding the severity of it. Next up was a visit to the Child Health Nurse who didn’t waste a minute raising her concern in regards to Ethan’s head. She was very helpful and put me in the direction of a highly reputable physiotherapist, providing us with a course of 8 sessions over a period of time. The physiotherapist blew me away on our first consultation. She did a full assessment of Ethan and from that assessment we both had a clear understanding of what was really going on.

Flat Head Syndrome Perth – Plagiocephaly – Torticollis

The cause of Ethan’s Deformational Plagiocephaly (Flat Head Syndrome Perth) is an underlying cause called Torticollis. Ethan’s condition is specifically a tightening and shortness of the muscle on the left side of his neck (the sternocleidomastoid muscle). It results in him tilting his head to the left side and also restricting his movement when he turns his head to the left. It is also the cause of his flat spot, as the muscle is tight and short, he will always turn in favor to his right to sleep or look, as it is more comfortable. His Torticollis is classified as Congenital Torticollis, which means it was present at birth but not discovered until 1-2 months after once they start to gain some head and neck control. Congenital Torticollis is a result of being in a position in utero that restricted neck movement, or from birth trauma.

Now that we had learnt all of this, I had to implement certain stretches and exercises from the physio 2-3 times a day to lengthen his left neck muscle and encourage him to use his left side. It was very overwhelming at the beginning as in some ways I felt like I had failed, I felt like it was my fault he ended up with all of this. But in the end those feelings pushed me further to make things right for my little man.

After a few sessions of physiotherapy and combining the stretches, exercises and positioning at home along with the SleepCurve mattress we had noticed a difference with Ethan not in his head shape but with his Torticollis. He went from 25% left side rotation to almost full left side rotation within just 3 weeks, I felt a sense of accomplishment at this point; as though my hard work had finally paid off. There were other small things like him falling asleep to the center and even to the left sometimes, responding to his left side when sitting or on tummy time, and bearing weight on his legs just to name a few. But just because we had some wins, there is still a lot of perseverance involved on my behalf to make sure Ethan is still going forward and pushing through anything limiting his muscle development.

Flat Head Syndrome Perth – Plagiocephaly – Torticollis

Two weeks went by after this, Ethan was around 4.5 months. I became really concerned about Ethan’s head shape again as it had started flattening even more, I also noticed his head was becoming wider. It had occurred because he had been sleeping more to the center so the back of his head became another flat spot; this is called Brachycephaly. I found myself in another hole, after discovering the Brachycephaly, it was evident that Ethan’s forehead had started bulging out and his ears were also asymmetrical from the Plagiocephaly (Flat Head Syndrome).

I was devastated for Ethan, especially as a grown adult. The chances of his Plagiocephaly (Flat Head Syndrome) and Brachycephaly correcting itself over the next few months were very thin, almost non-existent – we had gone from Type 1 to now Type 3 Plagiocephaly (Flat Head Syndrome). If it developed any further, Ethan would be facing further deformities to his cheeks, face, jaw and even a vertical head/temporal deformity.

This was beyond me. I mean beyond me in terms that the physio wasn’t enough anymore, although still very important for the treatment of his Torticollis. I wasn’t giving up though. I spent the night crying on my husband’s shoulder, just to let it all out. We decided that the Cranial Remolding Helmet, which I mentioned earlier, was going to be our definite next step; there was no other option at this point.

Little did I know these special helmets have a very rare market in Perth. I literally mean I could not find anyone who would make them as most specialists avoid them. They are seen as a cosmetic treatment rather than medical and for this reason they don’t encourage the use of them. I spent a whole week frustrated looking for places, I ended up going to Princess Margaret Hospital only to get the news that there would be a 5 month plus wait to be seen as a patient. By then Ethan’s bones in his head would have hardened and reshaping the head would be almost impossible.

Flat Head Syndrome Perth – Plagiocephaly – Torticollis

I was at our next physio appointment and told her we decided that were going to go ahead with a helmet but we were having huge difficulties finding someone who specializes in making them. My heart skipped a beat when she said she had a contact for a lady who specializes in Cranial Helmets after one of her patients had the same trouble searching for someone. I couldn’t get on that phone quick enough.

The lady is called an Orthotist. We got in within 5 days and had an assessment in which Ethan was a very strong candidate. He had his head measurements and photos taken followed by having his head casted and molded for the making of the helmet we would pick up 1 week later. The cost of the helmet therapy we went through is $750AUD and this includes the initial consultation, the molding, the helmet itself and all follow up appointments. The best part is you can see the Orthotist as often as you want and still have it covered in the one price. Private Health Insurance can assist in covering part of the costs I believe however Medicare does not.

Ethan began his helmet treatment almost 2 weeks ago now. He wears it 23 hours a day and only has it off for a bath and some tummy time. I have to wash the helmet everyday with soap and sterilize it with alcohol; it becomes very sweaty underneath and starts to smell so it’s important to keep it hygienic.

Now I can honestly say after taking a close look of Ethan’s head today when it was off, there is an improvement to his head shape. The flatness has become more rounded and the protruding part of his forehead has settled back a bit. Our next appointment is on Tuesday and I cant wait because the helmet already needs to be adjusted and cut as his ears have moved and the helmet isn’t sitting 100% anymore (which is a good thing).

So now that I finally had a breakthrough with the Plagiocaphaly and Brachycephaly treatment and I am happy with the results thus far, there is still the underlying issue of the Torticollis.

Flat Head Syndrome Perth – Plagiocephaly – Torticollis

I will continue Ethan’s daily stretches and exercises, I just feel that there is only so much it will do (as though we have hit a plateau) and my instinct had me looking further into other options that will help Ethan’s neck movement and spinal development. To my surprise there has been a huge, positive movement with the use of a Chriopractor and the treatment of all the conditions Ethan has.

I went to a local Chiropractor up the road from me as I have heard only good reviews from this place. The Chiro started feeling up Ethans spine all the way to his neck and noticed a huge issue on the vertebrae on his right neck, a huge tightness on the upper half of his spine up to the back his neck and a small issue to the bottom left of his spine. He explained to me how all of this is exactly what is causing the Torticollis and that this was the reason why there was only so much the physio could accomplish for Ethan. He also showed me a few positions, in which a baby should comfortably respond to, but for Ethan he responded by crying and screaming which showed it was painful for him. Another thing was that Ethan is almost 6 months and not rolling over, which we have being pushing for with the physiotherapy – the chiro addressed this by trying to twist Ethans body, being evident that he could not twist it due to a slight spinal restriction.

He used a tool called an Activator, which he puts on the part of Ethan’s neck/spine he is adjusting. It is gentle and with perseverance it will provide us with a great result. We have to have 3 Chiro sessions per week over the next few weeks and see how we go from there depending on how Ethan responds to the treatment. Each session costs $49AUD and is claimable through Private Health Insurance but not Medicare.

Flat Head Syndrome Perth – Plagiocephaly – Torticollis

After a long few months of finding the right help and following my instinct, Ethan is finally in the perfect process of treatment for Torticollis, Plagiocephaly (Flat Head Syndrome Perth) and Brachycephaly. We are where we want to be in terms of medical and I feel at ease knowing we are in great hands of experienced practioners. I don’t have to spend another night worrying or crying, in fact I am so overcome with happiness right now that I wanted to write this blog because it has been a huge journey to get the help we needed and I wanted to share it with you.

If there was one thing I wish I knew when Ethan was just 2 months old, it would be how serious Torticollis can actually be for a developing baby/child. It is definitely something that needs to be treated as soon as you notice it or have been told about it. Left untreated, they are at increased risk for many developmental and physical impairments.

Dacia A.

Flat Head Syndrome / Plagiocephaly / Torticollis Perth

Flat Head Syndrome Torticollis

Flat Head Syndrome & Torticollis: A Real Insight Into My Pregnancy & Birth Of Ethan Part I

I never would have thought that one of the most amazing times in my life, my second pregnancy and the beautiful, calm water birth that welcomed our son Ethan into our world would months later be discovered as being physically traumatic to my son with a case of Flat Head Syndrome (Plagiocephaly).

I remember the day I found out I was pregnant with Ethan. It was the day after my daughter, Ivanka’s second birthday – 29.11.2015. I remember this day so well because of how those two pink lines made me feel. After over a year of my husband Alex and I trying to conceive Ethan and all of the feelings that go along in that ride from hopefulness to complete disappointment, our prayer had finally been answered and we had been blessed with baby number two. I can’t explain the extreme happiness and joy that radiated through me the moment the pregnancy test showed positive. I screamed and cried with content and ran straight to my husband to share the news. It was such an amazing moment in our lives together.

From that moment I had fallen in love with another human. I didn’t know if he was a boy or girl, what his name would be or what he would look like, all I knew was that I wanted to love nourish and care for him as much as I possibly humanly could. Not a day or hour went by where I wasn’t thinking of him, he was always in my thoughts. All the plans for his nursery, the names just all the fun things in the early stages of the pregnancy were always in the back of my mind because that’s what made me feel closer to him – visualizing the nice things.

I loved going to all the antenatal appointments, it was a sense of getting to know the baby growing inside me and keeping updated with his health.  I was receiving my antenatal care through my trusted GP in the very early stages and from 3 months, The Family Birth Centre – part of King Edward Hospital – in Perth. The reason why I chose the birth center was that I wanted to experience one of these highly spoken of natural water births.  Whilst my daughter was born traditionally in a hospital room with me hooked up to an epidural for hours then the long hospital stay, I wanted to try an alternative birth approach that would benefit my recovery time, my body in the process of birth and being able to be back home as soon as possible with my husband and two children.

I went for my 20 weeks scan and for me this was what I had been waiting for since the day I found out I was pregnant again. I was sitting on the ultrasound chair; my heart was racing with anticipation. The lady was looking for a sign but I was the first to see it, it was a boy as bright as day! This is when it really hit home for us that we were welcoming a son into our family. How lucky we were to get one of each.

All the rest of the pregnancy went really well with no complications. I spent a lot of time bonding with him in my tummy, baby shopping and putting together a million names everyday until finally hubby and I could agree on one together; his name was to be Ethan Zander.

I went into labor spontaneously with Ivanka at 38w so I was expecting similar to happen with the second pregnancy. Nope, was not the case. This baby did not want to come out! I was induced naturally via a stretch and sweep at 41 weeks on a Tuesday around 11am. I went home and prepared everything in hope that he would finally make an appearance within 2 days. I had light contractions all afternoon and evening but I honestly thought they were just Braxton hicks because they were not changing intensity.

At 11pm I woke up to a huge contraction that just kept occurring and increasing intensity; by 12:30am we were on our way to the birth center.  Just after 1am I stepped into the birthing pool and labored in there. I had no drugs, the only thing I had was remembering the hypnobirthing meditation that I had spent months listening to, to push me through the next 1.5 hours. My favorite affirmations that I replayed in my head over and over again were “Mummy and baby working together in perfect harmony”, “Each contraction brings my baby closer to me” and “To trust my body’s innate wisdom to do what it is designed to do”.

When I was half way through pushing, I asked for the gas as the pressure was very intense and there was no break between contractions. The gas essentially separated my mind from my body; I was still in pain but my mind wasn’t focusing on it. I moved away from the ledge of the birthing pool and had my last few pushes with my husband opposite me. At 3:00am, I caught baby Ethan in my arms and bought him out of the water and onto my chest. It was truly breathtaking; there is no greater feeling than giving life to your own child and holding them for the first time as they take their first breaths.

I was so proud of what I had just accomplished.

*** To read Part II: “Flat Head Syndrome & Torticollis: Ethan’s Journey Part II”, CLICK HERE

Dacia A.

Flat Head Syndrome / Plagiocephaly / Torticollis Perth