STOP... Helmet Time! - Why we decided not to continue

There has been a lot discussion recently regarding our decision not to helmet our son, at least not until another evaluation around 6 months, so I thought I would make a post dedicated to our decision. This post covers both our viewpoint and that of the cranial specialist who has worked with our son, as well as the limited studies on nonsynostotic plagiocephaly and related head asymmetries.

As y'all know, Tycho didn't take well to the helmet at ALL. His sleeping, eating, and bowel movement-ing all changed for the worst, and he had terrible skin reactions on top of everything else. We tried for three weeks with several different modifications -- alternate wear schedules, cotton barriers between his skin and the helmet, distraction, lots of cuddles, and so forth -- and nothing made it easier on him or on us, as the parents who had to put it on and take it off. So despite following our specialist's orders and trying everything we could, we decided this past Sunday that we were done.

Yesterday was his follow-up appointment, where we were supposed to evaluate his progress, possibly shape the helmet again, and give our side of how everything has been going. We were nervous going in as we were 100% done with helmet therapy, but our specialist was open to and accepting of our viewpoint, especially after we voiced our many concerns and our reasoning for stopping. What followed was an honest discussion about possible health risks as a result of not pursuing treatment, Tycho's current path with his head shape, and whether helmet treatment (considering every variable, not only his head shape) is necessary or appropriate.

First, health risks. While she admits that no studies have been done in the US relative to head shape and related health risks (and I've confirmed that, as I haven't been able to find many, if any, definitive studies on the subject), there are conjectures as to how plagiocephaly may affect other areas of growth and development, such as trouble wearing glasses or TMJ and other jaw misalignment issues. These have not currently been linked to brachycephaly without asymmetry.

There was apparently a study done in China, where Back to Sleep has been around much longer than it has in the US (approx. 1970s versus the US's 1990s), relative to their space program. Those with brachycephalic head shapes were always ruled out from becoming astronauts because of an issue with balance, likely linked either to ocular issues or to inner ear problems due to their head shapes. Of course, the specialist said, becoming an astronaut involves incredibly rigorous testing, and only a certain percentage of people even qualify for the program, so despite the fact that everyone with brachycephalic head shapes failed these tests, it's by no means an accurate account of how this issue affects everyday life. Like she said, it's not like they're walking around drunkenly because they can't balance themselves. They just can't become astronauts. ;)

(Unfortunately, I can't find a link to that study. Not sure if it's been published or where. But trust me, I'm searching for it!)

We all -- the specialist, Matt, and I -- agreed that studies need to be performed in the US, especially because plagio and other abnormal head shape issues are becoming more common (20-25% of babies have plagiocephaly, a statistic that does not include other head asymmetries). In the meantime, because there have been no documented links between head asymmetries and health issues, cranial remolding orthotics and other treatments have been labeled "cosmetic" and are sometimes not covered by insurance, either in whole or in part. For what it's worth, our insurance did cover about 75% of his treatment, which includes the orthotic and all follow-up appointments, but will not cover a second helmet if we decide to pursue this when he's six months.

Second, Tycho's current head shape development. We had a scan done yesterday and his cephalic index, which measures the width to length ratio and determines the severity of a brachycephalic or other head shape, has actually worsened, from the previous 97% when he had his first diagnostic scan five weeks ago to yesterday's 100%. This essentially means that his head is as long as it is wide when looking at it from the top.

Considering this, we did have a serious discussion about, health risks aside, whether it was worth it to continue treatment. The specialist was completely honest with us, saying that she would like if we could continue therapy (so would we!), but considering his myriad terrible reactions to it, it was probably best to let it go for now, even with the consideration that it was getting worse -- I'll get into that shortly. Matt and I both suggested having a reevaluation at six months, an idea she really liked, so we had his head scanned to use as a new baseline for a comparison in a couple months.

We also discussed development outside his head shape. When we discussed with her that his other areas of development were being delayed as a result -- he didn't want or wasn't motivated to try anything new or to do anything he was doing prior to the helmet to advance his development -- and we were already dealing with developmental delays, she agreed that it was more important to work on those areas than to continue forcing the helmet and risk further delays. It was tough to weigh the two, and no parent should ever have to choose between them! But to us, his development was far more important to us than his head shape, and if it meant discontinuing one therapy in favor of another, we were going to continue with his mental and physical development.

Third, whether helmet treatment is necessary or appropriate. This relates to the second point as, obviously, whether it's necessary depends on whether his head is getting better on its own with repositional therapies, and whether it's appropriate depends on his physical, mental, and developmental reactions to said therapies. I had done quite a bit of research on asymmetrical head shapes righting themselves as babies grew and started sitting, standing, and walking more during waking hours, and what I found was confirmed by our specialist.

Of course, you all know the story I posted yesterday about a mother on BabyCenter who decided not to helmet her baby, despite his obvious brachycephaly, and instead let it work itself out. While there is no guarantee that Tycho's head will correct itself in the same manner as that mother's son did, there has been a very promising study published in October 2004, which states, among other points:

The overall prevalence rates for the cohort were 16% at 6 weeks, 19.7% at 4 months, 9.2% at 8 months, 6.8% at 12 months, and 3.3% at 24 months. More than twice as many infants were classified as having plagiocephaly alone (OCLR ≥106%) than having brachycephaly alone (cephalic index ≥93%) at 6 weeks, but at both 4 and 8 months, more infants were classified as brachycephalic than plagiocephalic. This difference had disappeared by 12 months, with rates for both dropping considerably by that age. In the early months, a few infants were classified as having both plagiocephaly and brachycephaly (Table 3).

Overall, 29.5% of the cohort infants developed either plagiocephaly or brachycephaly or both at some stage during the study observation period (Table 3); however, by the age of 2 years, only 3.3% were still above the classification threshold for abnormality (Table 3). Most cases manifested at 6 weeks or 4 months; only 4 new cases had developed at 8 months, and thereafter no infant developed deformation.

CONCLUSIONS: [...] Although the maximum range of head shape deformity was seen at 6 weeks, the greatest point prevalence of plagiocephaly in our cohort was seen at 4 months. Almost 30% of the cohort exceeded the chosen cutoffs for classification of cases at some point in the first 8 months, but most cases improved with time, leaving a point prevalence of NSP of 3.3% at 2 years.

Note that NONE of these children were referred for helmet therapy.

I asked the specialist if the study was true -- if the worst time for head asymmetries was around four months, and if head shapes naturally got better afterward -- perhaps not to the perfect ratio between 78% and 85%, but at or better than 93%. And she confirmed that, yes, this was typically the case. The prognosis or results obviously won't be as good as if we continue helmet therapy, but some natural improvement is better than none, and the prognosis for that is still good.

This is dependent on our continued work on his torticollis, which is of greater concern since side preference can play a role in whether brachycephaly improves and whether plagiocephaly will become an issue, but that's not a problem at all -- we're going to continue our chiropractic work and physical therapy, plus our at-home exercises.

We also bought a Babymoon pillow, which we've been using for the past couple days, in the hopes that giving more empty space while he's on his back -- in the crib (yes, we understand the risks of pillows in the crib!), during playtime, and in his bouncer or other seat where pressure may be exerted on his head -- will give the back of his head the room to grow in that direction. The reviews for it are great, and honestly, we wish we had found it sooner! The specialist took a look at it, and while she said it won't be as effective as the helmet as it won't actively redirect growth, it seems to be a good way to passively do some good.

Also encouraging was the fact that, while Tycho's head is definitely a candidate for helmet therapy if it had worked out, there have been other children and parents who went through the scans and other diagnostics, whose heads were also candidates for therapy (including those much worse than Tycho's!), and who ultimate decided not to pursue helmet therapy. While this is by no means a case of, "If they jumped off a bridge, would you do the same?", it's at least reassuring to know that there are other parents who are making the same decision, and as the specialist said, they weren't nearly as well-educated on the side effects, risks, and prognoses as Matt and I are.

All in all, while our experience with the helmet itself has been a negative one, our experience with the specialist was not, and we are eternally thankful for her trying to accommodate our and Tycho's needs and for being up front and honest with us when we ultimately decided to stop helmet therapy. After all, as a mother herself, she understood what a difficult decision this was to make for our child, and she realizes we're making an educated decision. "Before I had my daughter, I was like, "Oh, yeah, you shouldn't have a problem at all, it's just a helmet!" Now that I have a kid, I get it -- it's really hard."

I hope this answers y'all's questions on our reasoning behind stopping helmet therapy. :) I'll continue to update on his progress as Tycho gets older. If you have any other questions or things to add, let me know in the comments! And of course, if you're facing these same issues, know that I 100% support anything you decide to do!