It was at Jonathan’s two month appointment that our pediatrician first pointed out that the back of his head was flatter than the other. Both Nathan and I had noticed it, too. Primarily because we knew what to look for this time around. Harrison, also, had some head flatness on one side of his head. Likely from sleeping for long periods of time very early in his life and preferring to have his head to one particular side. Jonathan, also, was a good sleeper pretty early, and the doctor gave us some exercises to help us work with him to start stretching his neck muscles to help him to put less pressure on the flat side of his head.

We didn’t think much of it, given that Harrison’s head flatness went away without much work. We did our stretches with Jonathan, but noticed that his flatness wasn’t improving.

At his four month check up, his pediatrician referred us to the local children’s hospital to their plastic surgery clinic to get an expert opinion. It was the very beginning of December when we got in with Plastics, and Jonathan was officially diagnosed with two things:

Plagiocephaly: which is the flatness of the back of his head

Torticollis: which in layman’s terms meant that Jonathan had stiff neck muscles on one side of his neck. Why was only one side stiff? Likely because he didn’t have enough room in utero to move as much, and got stuck in one place for a loooong period of time.

The torticollis likely caused his head flatness because he preferred looking to one side over the other given his stiff neck, thus always opted for sleeping, playing, etc., with a tilt to one side.

Trying not to panic that day, the plastic surgeon informed us that utilizing a cranial helmet was going to be our decision. Jonathan’s measurements were coming in as what they deemed “moderate” flatness. Sometimes the flatness on the back of the head can force pressure on other facial features causing them to move and be uneven. Jonathan’s flatness had not caused any movement of his other facial features, thus resulting in the doctor telling us that helmet therapy was going to be a personal choice. He was measured by a specialty clinic that day for initial measurements, and referred to physical therapy to help work on and improve his neck stiffness.

We made a plan to start seeing physical therapy once a week, and revisiting the clinic for re-measurements of his head at the beginning of January.

We worked really hard with Jonathan’s physical therapist. We stretched him, worked on helping him to even out his weight between his two hands, and endless hours of tummy time. If Jonathan was awake, he was on his tummy or sitting upright to alleviate all pressure on his head.

The truth was, the end of December came around, and Nathan and I felt like his head was getting better. But we knew that at his remeasurement date in early January, we’d have to make a decision on the spot about whether to move forward with helmet therapy. Because babies grow the most in their younger months, the sooner a decision is made to proceed with helmet therapy, the better. Earlier helmet-ing = less time in the helmet. Eventually we decided going into that appointment that if his head measurements hadn’t improved by half, that we would proceed with the helmet treatment.

The day came, and I took baby J in for his measurements. Nothing had changed from his initial measurements. I was disheartened and felt like I’d failed him as his mom. He was measured for his helmet that morning, and I left feeling in shock and just sad. And I sat with that feeling for about 24 hours. Of course, I talked with family and friends about it. I kissed my sweet little boy’s fuzzy head of hair over and over again that evening and in the following weeks leading up to Jonathan receiving his helmet.

Jonathan received his helmet last Monday. Having lived with his helmet now for a week, processing it and learning how we are going to do life with it, I have to say it’s not as bad as I thought. Like most things that we worry about, right?? We’re continuing his physical therapy, because while the helmet will correct his head flat-ness, he still needs to alleviate the torticollis in his neck to allow him full range of movement to do all the things like crawl, roll over both directions, and all of those exciting milestones.

We’re also adding in seeing a chiropracter that specializes in babies with torticollis to see if there is misalignment within in his body that is causing his neck stiffness to relax with just stretching and exercises provided by our physical therapist.

You’ll be seeing a lot more of our little guy in his blue helmet for the next few months. J’s adjusting to life with helmet nicely. He’s started wearing it 23 hours a day over the weekend, and I get my head and cheek kisses in nursing him before bed, which is the sweetest time to spend with a little one, in my opinion.

Based on the information that all of our doctors have right now, they have no reason to suspect that his plagiocephaly or torticollis is indicative of any neurological damage that may require surgery. The other thing about plagiocephaly that can be misconstrued by the general public looking at a baby wearing a helmet, is that there is no brain damage to him. What’s being corrected is entirely for physical appearance. Given that he’s a boy, and head shape tends to be much more noticeable for boys because they tend to wear their hair short, it seemed best to go ahead and fix it.

They gave us a very wide range of how long Jonathan would be in his helmet. It could be anywhere from three months to six months depending on how many growth spurts he has in the next few months. We’re crossing our fingers that he’ll be saying goodbye to his helmet well before eating his birthday cake at his first birthday. 😊