Cranial Helmet and Plagiocephaly: Lucy Update

Lucy’s Corduroy Bows / Ralph Lauren American Flag Sweater / Jeggings / Large Pumpkin + Small Pumpkin / Cane Serving Tray

In case you didn’t catch this post, Lucy is currently wearing a cranial helmet to correct Plagiocephaly. (Click here to learn more about Plagiocephaly, and to read about our decision to get Lucy a band.) She’s been wearing it for a little over two weeks, and things are going well!

Wondering what’s on Lucy’s head?! It’s a stocking-like mask that allows technicians to take measurements. Lucy isn’t bothered by it, and she can breathe easily!

We went in for a follow-up appointment a few days ago, and we received some pretty awesome news! After only two weeks, we’re seeing dramatic improvement. If you look at the comparison scan above, you can see how the flat spot on Lucy’s head is rounding out, and the space above her forehead is filling in. Isn’t it crazy?!

Deciding to get the helmet was a difficult and emotional decision, but when we saw the change, the worry and weight that plagued us for so long was lifted. I can’t tell you how happy we are!

Parenting is like shooting in the dark. Every day, we make zillions of decisions for our kids… and while we always have their best interests in mind, very often all we can do is hope and pray that they’re the right decisions. This time, though, it’s pretty clear that we made the right decision… and we’re so, so relieved.

A few updates:

Because of her quick progress, Cranial Technologies says that they may shorten Lucy’s treatment. (We’d originally been told that she’d be in it for six to eight weeks, but now we’re looking at five to seven weeks.) To be completely honest, we’re wary of taking her out of the band early. Mitch and I are so happy that she’s making quick progress, but what’s to say that she doesn’t develop another flat spot after she’s out of the band?! I think we may end up pushing to keep her in it, but since receiving that information, friends of friends told us that it may be possible to have her simply wear the helmet at night, almost like a retainer after braces. We haven’t spoken to Cranial Technologies about this yet, but we definitely like the idea. (Please weigh in if your child had or has a helmet!)
Lucy is sleeping through the night! This is huge. Right before she got the band, we took her out of the Baby Merlin Magic Sleep Suit because there is a risk of overheating. It was tough at first, but then we got the Anna & Eve Baby Swaddle Strap and the Halo sleepsack, and BOOM! We’re back in the game. And thank god. Because the family was falling apart. 😂 My dad likes to remind us that the Air Force used sleep deprivation in POW training camp while he was in the military. It’s the real deal, and pilots and parents alike crumble when they’re exhausted.
Lucy is still comfortable. At each followup appointment, Cranial Technologies checks on her progress and makes any necessary adjustments to the band to accomodate for growth and changes in the shape of her head. This entails shaving down certain areas. It’s pretty cool! And because the helmet doesn’t place any pressure on the skull, Lucy continues to experience no pain. So happy about this!
Lucy spends one hour per day without her helmet. During this time, we give her a bath, clean the band with Isopropyl alcohol, and check for red marks. If we find red marks, we watch them for an hour. If they go away, we’re all good… and if they don’t, we simply need to go into the office to have adjustments made. That hasn’t happened yet, though!
One thing that we’re struggling with is something called “cradle cap.” Cradle cap is a skin condition that affects most babies; it’s characterized by rough, scaly patches on the scalp. (It’s not painful, and very rarely is it itchy.) We don’t really know whether the helmet is exacerbating it or it’s just a coincidence, because the helmet doesn’t even touch the affected area. So who knows?! To remedy it, though, we’re brushing her scalp, washing her hair every day, and letting baby oil sit on her head for 15 minutes before washing it out. (Totally thought that washing her hair every day would only worsen things, but doctors actually recommend it!) So yeah. She still has it, but I do think these home remedies are helping.
We decorated Lucy’s band with a bow. This is such a funny thing, haha, but I’ve received a lot of messages about it, so I thought I’d talk about it! There are SO MANY creative things you can do to cranial helmets to personalize them. For example, you can have them painted (or paint them yourself) with baby-safe paint, or buy decals (available on Etsy). I honestly can’t get over some of the designs. They’re so cute! Mitch and I decided, though, to just keep things simple and go with corduroy bows. Since we used velcro, the bows are interchangeable, which is fun. (Just slip the alligator clip out and replace with the velcro. The velcro is strong and doesn’t come off!) Though she wears her pink bow almost every day!
We’re being very mindful of the risk of overheating. When we first got the band, Cranial Technologies explained that babies overheat very easily in the helmets, even in cold weather. Because of this, we were instructed to dress Lucy in layers or have a change of clothes at the ready so we can quickly cool her down if she becomes hot. (She’s wearing a sweater in these photos, but it wasn’t a big deal since we were at home.) The only downside to this is that we do get quite a few questions from concerned strangers. For example, when we recently stripped her down to her sleeveless dress because she was burning up in a toasty restaurant, a good number of people said things like “She must be freezing!” and “She needs more clothing! It’s so cold!” These comments sting a little, but I just take the time to explain the situation and how dangerous it is for babies to overheat. No big deal!
Conversely, literally no one has said anything disparaging about the helmet itself. That’s been SO nice. Like I said in my first post, everyone has been so kind about it. I half expected that Lucy would be treated differently and that Mitch and I would get some grief about our decision. But literally every person we’re interacted with has been wonderfully supportive and empathetic. We’ve actually made some new friends in the neighborhood because of Lucy’s cuteness 🤗, and so many people have stopped us to share their success stories! My heart is full and my faith in humanity has been restored. :)

Questions?! Let us know and we’ll do our best to answer them! And again, thank you for your support. It’s been so helpful during this journey and we’re incredibly grateful for your kindness!