Why did Raphael wear a helmet?

When we went to Raphael’s 3 weeks appointment the doctor noticed a flat spot on the right side of the back of his head. The doctor ask Mark and me if he’d prefer to look to the right side and/or had his head turned to the right side while he was sleeping. In fact, we did notice this preference but we didn’t think it would have any “consequences”. It is called Plagiocephaly, which is the most common form of flat head syndrome and presents itself as an asymmetrical head shape with one side of the head usually being more flat than the other side. In our case it’s the right side.

He was also diagnosed with Torticollis which basically is an abnormal neck posture. The SCM (sternocleidomastoid) muscle is tighter and pulls the skull from where it attaches behind the ear. It causes the baby to have a head tilt and/or turn preference. Raphael does have a tilt to the left side (his left muscle is tighter) which further contributes to the tendency of keeping the head to the right side. And because babies skull is very soft in the first weeks of their lives many babies with torticollis can therefore develop plagiocephaly as a result – so did Raphael. The most annoying thing was that we could have prevented it in turning his head more to the other side and do more supervised tummy time while he was younger.

Treatment for Torticollis and Plagiocephaly?

We started to take Physical Therapy at the Lehigh Valley Health Network (Rehabilitation Center) once every week ever since Raphael was diagnosed with Torticollis and Plagiocephaly. Since Torticollis can lead to difficulties interacting with the environment, delayed whole body awareness and also muscle weakness we definitely wanted to work on his head posture and do stretching exercises regularly with him. Infants with untreated Torticollis may be at increased risk for early motor delay, impaired balance and coordination and delay in acquisition of gross motor skills.

Just to clarify: Those Physical Therapy hours had nothing to do with Raphael wearing a helmet. The therapy was “only” to help him hold is head straight and working on the range of the his head rotation.

During the first 2-3 visits we also talked about the flat spot of his head (result of Torticollis) and that there is a way to “reshape” the skull or better “help it grow round” while it is still soft. In the beginning I was struggling a lot with the idea of having him wear such a helmet. I wasn’t sure if I really wanted to bug him with this wearing such a helmet 23 hours each day. Is it really necessary? Or does it only has the “cosmetic” aspect? Of course I had millions of questions in my head. His head was not so flat but anyway, I decided to hear them out at least, do some measurements to see where we’re at. No sooner said than done Raphael and I went to see the doctor. Rae – who was seeing Raphael at Valley Prosthetics and Orthotics Inc. – did some measurements and we rescheduled 2 follow-up appointments to see if his head will get worse. Raphael was a little bit above “normal” range but he would still qualify for a helmet. Since the number got a little worse, unfortunately – we decided to do it.

After 2 weeks we came back for the fitting and honestly I was a little bit shocked – it was gigantic. I felt like Raphael’s whole head is just the helmet. It took really long to adjust everything, Rae had to put the helmet on and off to see where she needed to cut away the material and Raphael was already bored and tired. After 2 or 3 hours we were finally able to go home and start to get him used to the cranial helmet.

The plan was to start with 2-4 hours the first day, go up to 4-6 h the second day, then 6-8 hours the third day, start to put it on for naps and after he got used to wearing it 12 hours, trying the helmet over night. Raphael did really good with the helmet when he was awake. It didn’t bother him at all, although we had some big issues with the the helmet rotating – A LOT. His ear always got stuck when he was rolling from back to belly and the other way around, especially during the night. Besides that he didn’t like it when his ears got stuck, I really didn’t want him to end up having DUMBO ears. I felt super uncomfortable with him wearing it when it wasn’t fitting perfectly. Although we came in for some more readjustments we still struggled a few weeks later with the same issue and I was already super annoyed and ready to tell “That’s it! We tried it but the helmet did not work out for us!” On top of that it was really expensive and I expected the helmet to fit properly – to fit perfectly. I emailed Rae one more time to share my concerns with her and she was super understandable and asked us to come in again so she could to do some more adjustments. Since it was that expensive I was willing to give it one more try.

And now looking back I am SO GLAD I did not give up on it even though I struggled A LOT! After she did her last alternations, the helmet did not rotate anymore and Raphael started to wear the helmet 23 hours a day (except for bathing time of course + during vacation at the beach) Everything was working out really good. We got a check up appointment after 1 month and then again after another months for some readjustments (since his head was growing, so she took a foam-layer out of the helmet). By that time we started weaning him and he only wore the helmet during nap times and night times. 2 weeks ago we went back to do the measurement (although we had to switch the doctor since we moved to Michigan) for his head and now he is in that “normal” range. We are really happy how his head shape turned out and again I am really glad he wore it even though it was more “stress” in the beginning with putting it on and off, cleaning the helmet everyday and bathe him more frequently.

In my opinion all the struggles and that stress were SO worth it. It may be a little annoying when people look at your child and feel sorry or bad for him/her but don’t get nervous about that – I always used to say: Don’t feel sorry for him, he is a very happy and healthy baby, we are just fixing his flat head 😉

If you have any question and/or if your child might need a helmet too or was diagnosed with Plagiocephaly and/or Torticollis, please feel free to reach out to me. I’d be happy to answer some questions and to share a little bit more of how I have experienced the whole process! But whatever you decide to do you will know what is best for your child! 🙂

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