our plagiocephaly experience

Our Experience With Plagiocephaly

Plagiocephaly. Say it out loud. It sounds like a horrible condition, but it’s more common than you think.

In fact, the rise of plagiocephaly can be attributed to the Back to Sleep campaign, started back in 1992 (the generation I was born into) by the National Institute of Child Health and Human Development (NICHD). It began as a public service announcement to parents urging them to have their babies sleep on their backs.

Sleeping on the back was deemed much more safe for children and would reduce the risk of SIDS. And while it has largely lead to a huge drop in SIDS cases (amazing!), it has in turn lead to more cases of plagiocephaly in babies since it’s inception.

So, to begin with our family’s personal experience; we’ll start with the term, and condition, tortocollis. Tortocollis is a condition, which causes the muscles in the neck to turn to one side. Usually, it will prevent or inhibit your child’s ability to turn their head in both directions. This can sometimes lead to another condition called, Plagiocephaly, which is characterized by a flattening of a baby’s head.

Typically, it is believed that a child’s plagiocephaly will be caused from tortocollis, because they cannot move their head in the opposite direction, a flat spot will develop. And thus, your child has plagiocephaly. However, in our case, our son’s (Noah) case was not caused from tortocollis, but because he had a preference of sleeping on his right side.

Because of his repeated sleep on the right side, he developed a flat spot on the back right-side of his skull. If you don’t know, which you should if you’re a parent, is how soft a babies skull is. And that’s because it still has not ossified yet, and is vulnerable to pressure.

Just before his two month birthday, is when we really took notice of his head. For a couple weeks we weren’t entirely sure, because it wasn’t noticeable in every position. But come his 2 month check-up, we brought it up to his pediatrician, and he noted the asymmetry of his head.

He told us we could try re-positioning his head while he sleeps to combat the issue. Fast forward 2-3, and Noah is 4-5 months old. We literally we turn his head to the left when he fell asleep to he wasn’t continuing to sleep on the flat part of his head. Sometimes his head would remain to the left, where to had re-positioned it, but most of the time he would immediately, or momentarily, turn his head right back to the right side – his preferred side to sleep on. You can only do this so many dozens of times throughout the week, before you have to consider other options.

noah-on-floor-plagiocephaly

Consider other options – is exactly what we did. And ultimately we decided it was best for our son to be fitted with a cranial band. We went back and forth about the pros and cons, but we decided it was best to at least get a doctor’s opinion. We went to Mass General Hospital, in Boston, and spoke with Dr. Butler, who explained the causes, treatments, etc. We had already done our own research, so it was like he was preaching to the choir. He was excellent I must say!

Dr. Butler, explained that plagiocephaly usually corrects itself by the time a child reached two. He also told us that someone would NOT be able to tell the difference between a child who received a cranial band, and one that did not receive a cranial band, again around the age of two. However, we didn’t want to take the chance that is didn’t correct itself.

While we wished we didn’t have to resort to this measure, it had been 2 months of unsuccessful re-positioning techniques that didn’t appear to make much of a difference. Dr. Butler even pointed out how our son’s facial features were coming forward more on the right right of his head, and were set slightly back on the left side.

With a cranial band on the horizon, it should ensure that pressure would be exactly where it needed to be on his head in order to round out the asymmetry. Call us vain, or what you will, but we did it because we didn’t want our son’s facial features to be distorted – had the condition not corrected itself. There’s no going back once the skull is fused.

Noah was scanned with technology called the STARscanner, which he was placed into and took a 3D scan of his head in order to create a custom cranial STARband for him to wear for the next three months.

Today is his third day of wearing the STARband for 23 hours a day, with 1 hour off for feeding, and washing his head nightly. A routine that we will continue for about the next 3 months. Here’s how we transitioned him into the 23-hour day schedule.

Wearing Schedule

Day 1: 1 hour on & 1 hour off, not during naps/sleep
Day 2: 2 hours on & 1 hour off, not during naps/sleep
Day 3: 4 hours on & 1 hour off, during naps/during sleep
Day 4: 8 hours on & 1 hour off, during naps/during sleep
Day 5: 23 hours on & 1 hour off, during naps/during sleep

It has been about a three weeks since he first started wearing his STARband, and we have already noticed some difference in the shape of his head! We have a long way to go before he’ll no longer have to wear his cranial band, but we are excited to share updates along the journey!

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