Today was a pretty cool day. After 8 weeks of being banded, Quinn got the good news that she was all done with her helmet! While this turned out to be a pretty easy and painless process, I was just shy of devastated when we got the initial recommendation for treatment by her pediatrician. Coming out on the other side I am so happy that we decided to go forward with treatment and I wanted to share our story for anyone who is interested and especially for other parents weighing their options.
Quinn was born 7 weeks premature. We were incredibly lucky and she was perfectly healthy so after a short 8 days stay in the NICU she was able to come home. In the weeks and months that followed, every doctor’s checkup inevitably came with concerns that lead us to a different specialist appointment. If there’s a medical specialty, Q’s probably gone to see them. Quinn also had pretty wretched reflux which was combated with a combination of medication and special positioning when sleeping, i.e. on her back partially sitting. While this was a great solution to something that was causing her a significant amount of pain, it created another problem.
The first time we became concerned was when she was about two months old. No matter what I did she was constantly looking over her left shoulder. My first instinct was that she may be developing torticullis and when I addressed this with Dr. Little (our ped) he sent me home with some PT stretches and a plan for repositioning. Despite our best efforts and trying lots of ways to get Quinn off her back and looking in another direction, we were told at her four month appointment that doing the DOC Band was probably our only option to correct some misshaping of her head.
This sent me into a tailspin of doing my own research and going through the check list on my own to assess our situation. It was clear that Q needed to move forward with the therapy. After our initial consult it was confirmed by the therapist at Cranial Technologies that Quinn would benefit from treatment. She had a combination of plagiocephaly / brachycephaly (fancy talk for some flat spots) that was also affecting her face shape and symmetry. Her poor little ears were all catawampus too and I firmly believe the craniofacial issues were causing her to snore since she stopped a week into wearing the band.
Now I see that this wasn’t a huge deal, but I was so sad and so tired of being told that there was either something wrong with our daughter or another potential problem. Not too mention, I was dreading dealing with strangers looking at her in public and asking insensitive questions about “what’s wrong” with our baby. Being a preemie, she does look a bit petite to other kids her age and it never ceases to amaze me how random people need to comment on how tiny they think she is.
The most frustrating part of this whole process was our insurance wouldn’t cover a single cent of her treatment. In the spirit of full disclosure I feel the need to tell you all that Cranial Technologies was wonderful and they charged us what would have been the negotiated rate with BCBS – but it was still $2,500 added on to the huge pile of other medical expenses we’ve incurred this year. The reason for this is most insurance companies will deny coverage on the basis that the treatment is strictly cosmetic and not medically needed. Previously treatment was viewed as strictly cosmetic, but there are now a number of studies that show these conditions left untreated cause TMJ and other orthodontic issues as well as vision problems. Beyond just the visible issues there are also unseen complications when you look at skull structure and how that affects the area allowed for brain tissue growth.
After our initial consultation where treatment was recommended we set up our appointment for the DSI – digital surface imaging. The DSI machine looks like a teleporting device and takes a series of photos to create a 360 digital image of your baby’s head. They have to wear a stocking over their face to create a smooth line and it totally makes your kid look like a burglar.
Two weeks later a mold of your kids’ skull comes back along with the band. For the first three days you wear the band for 3 hour increments taking it off to do skin checks. If you get through this 48 hour – 72 hour period fine you start wearing the band for 23 hours a day. Since the helmet was going to be a part of our daily lives I decided we were definitely going to decorate it to try and make the experience as fun as possible. One trip to Michael’s and an insane amount of paint and other supplies later we had created a magnificent purple masterpiece, complete with Mama and Baby Owl. A word of caution: If you decide to paint your child’s DOC band you definitely need a primer to give the surface “tooth” and do NOT seal it with ModgePodge as you will be instructed to do. I learned this the hard way when I went to get Q out of bed and her head was literally stuck to her sheets. I was so pissed (it took me four hours to paint the band) that I called the ModgePodge and Folk Art Paint manufacturer Plaid. I had a very nice chat with a customer service rep who said they get calls like this all the time and that I need to use a hard sealer. Problem solved.
59 days after weekly appointments we were very excited to get to go 2 weeks between our last appointment with the hopes we would learn we were done. The band came off today and we go back for our exit visit in two weeks where we get to use the teleportation machine again to get new 360 pictures of our girl’s new and improved dome.
I want to reiterate that I am so happy we decided to do this. First and foremost, Quinn looks like a totally different baby now then when she started treatment and I mean that in the sense that she looks like she should have from the beginning if her positioning and strength issues hadn’t caused the initial problems. It was also a really great experience in that it provided an excellent opportunity to work on quips and smart ass answers when people asked stupid questions. I really liked telling people she was training for a pee wee lacrosse team – gotta get a jump on that college scholarship!
For the most part though people were uber supportive and wanted to tell us about their kids’ experience wearing the band and some just wanted to know what it was for. Glad we did it, ecstatic that were done! Now look at muh bebe’s purty dome!