As we near the end of this journey in the helmet, I can finally look back not in anger (insert Liam Gallagher vocal here) but in relief. It was at the four month wellness check that I first really noticed the flat spot. His birth was so traumatic for me that for those first four months, I was just so over the moon he was home. I had no idea what lay in store. I was worrying about developmental delays and a brain injury. To me his sweet little head with shaved bald spots all over was perfect. So when our Pediatrician mentioned the flat spot and Plagiocephaly it was like someone turned on a light. There was no denying it, his sweet little head had a flat spot. He told us to try repositioning, use rolled receiving blankets and prop him onto his good side. He even mentioned this special pillow. Basically anything to get him off that side.
Now a diagnosis of Plagiocephaly usually goes hand in hand with Torticollis. I was aware of this the first few weeks he was home but honestly didn’t worry too much about it. After all, his big brother had mild torticollis and it eventually went away with mindful nursing positions. However, this was different. Our Pediatrician recommended us to a Physio Therapist. A week later, I was learning how to stretch my baby boy’s sternocleidomastoid muscle. Our awesome PT told us that in order to ultimately fix the Plagiocephaly, you need to address the torticollis first. Ok, this made sense. Everything about this felt wrong. That was my first thought as I held his little head in my hand and held down his shoulder with my other hand stretching his neck muscles. Thank God I have his big brother home instead of at daycare. He was a huge help getting baby to focus in the correct direction when we’d do our daily stretches and kept me grounded dealing with all this. He is the best big brother and loves baby so much.
A month later we had the first of many follow ups at Sick Kids Hospital. We met with a team made up of a registered nurse, physio therapist, orthotist and then a Neurologist. This was the first time he was assessed after being released from the NICU. They noticed the flat spot too and setup an appointment with Orthotics to see whether we’d need a helmet.
At this Orthotics appointment, baby was put onto this machine called a Star Scanner. It looked pretty harmless. This machine takes two seconds to capture 3D data of baby’s head. The first scan showed the obvious flat spot. He was measuring at 12 mm which is in the moderate range. We decided that we would keep trying to reposition and decide at his 6 month scan whether we would helmet.
Fast forward to the six month appointment there’s been no change and it’s time to decide. After doing research and talking about this extensively, we opted for the helmet. I took exactly two weeks for his custom orthotic helmet a.k.a. STARband to arrive. It was a plain white sterile looking clunker. I hated this thing. I had already sought out an artist to hand paint the helmet so I didn’t have to look at this thing for very long. Let me just say, it was a rough weaning in period for us. We had a heat rash that would not go away for a week. Then he got sick, another two weeks not wearing the helmet. Then issues shipping his helmet to the artist, another two weeks wasted. He was finally in the helmet full time, which is 23 hours each day just shy of his eight month.
Every day I blamed myself. How could I have let this happen to my sweet baby? This baby had already been through a lot and now I was stretching his neck every day and forcing him to sleep on his side which he hated?! And now add a helmet to the mix. It’s funny but after doing research and talking to other parents of helmet kids, you realize the parents are the ones who have a hard time. The babies get used to these things fairly quickly.
We recently had a positive Star Scan and his very last Physio appointment. He is so close to finishing treatment. I cannot wait to kiss that sweet little auburn haired head of his! I miss those the most.
I was probably most worried about nursing him in the helmet. It was actually no different. I can still babywear in the Solly Baby Wrap and the Ergo. Other than the odd head bash of clavicle crush, both he and I have gotten used to the helmet.
We’ve received our share of staring while out and about. Some people smile, I had one woman politely ask me while in line at Walmart what the helmet was for. I would actually prefer this type of interaction over the stares. I don’t blame them. His badass custom painted Cat in The Hat/Steampunk Aviator is badass.
So you’re probably wondering how the hell you clean this thing. Let me tell you, it’s like having a third child to bathe. Every three hours, I take the helmet off and wash his head with mild baby shampoo and wash the inside of the helmet with a baby washcloth and the same baby wash. If it’s really stinky and it does get pretty bad, I take a soaked cotton ball in rubbing alcohol and wipe the entire inside of the helmet. Then I use the cloth and baby wash to clean. I then take my hair dryer on the COOL setting, and dry his hair and the inside of the helmet completely. Before the helmet goes back on, I give him a bazillion kisses, brush his hair and rub Baby Cornstarch Powder into the inside of the helmet. This helps with the sweat.
I feel a little silly now worrying so much about him being in the helmet. He’s now 10 months old, has almost four teeth, can crawl and stand up and has full range of motion in his neck muscles. The helmet hasn’t stopped him one bit and why should it? This baby is tough as nails!