The beginning
I first noticed his head shape just before his 1 month check-up. His head had a flat spot, which is pretty common but his was a really sharp diagonal flat spot. His Pediatrician assured me it would round out on its own as he got a little older. At about 6 weeks I really started to notice something “off” about his sweet face. It almost seemed like it drooped to one side and he was always looking to that side.
The night before his 2 month check-up, Jody made me swear not to let the Dr’s dismiss his “flat spot”. He could see the asymmetry in his face and was concerned too.
That night I turned to my good friend google- because that’s the smartest thing to do when you’re worried, right? Haha. I read a lot about head and necks. I even found an assessment, with a picture of a head that looked EXACTLY like B’s head.In a World of “but-I-read-it-on-the-internet “diagnosing mothers, I didn’t want to sound like a crazy so I just brought it up casually at the appointment. The NP called in a Dr to have a second look at B. She told me it looked like B had torticollis, or a shortened tilted neck muscle. When a child has severe torticollis they develop may plaigocephaly, or a misshapen head which can lead to facial asymmetry. She told me it is pretty common with multiples, especially with a head down “baby A” (Brandon). Seeing as how I’m 5’3” and the twins weighed almost 18lbs, I could see him getting a little squished. B would need to start physical therapy ASAP. He would also need a series of skull x-rays done. They set B up with a referral for a pediatric PT, with an appointment for the next day. The PT wanted to see him weekly for the next 6-8 months, for 30 minute sessions and it was a 20/25 minute drive each way. Oh and our insurance would only cover 10 sessions. Thinking about all of this with a 2 ½ year old at home, 8 wks post partum with twins was a teeny bit stressful. I kept telling everyone I just hoped he wouldn’t need a helmet. “Please don’t let him need a helmet.” B was such a great sleeper, I didn’t want him up all night uncomfortable, sweating, losing hair, getting sores and to be honest (and ridiculous) I couldn’t bear to cover his sweet, soft hair. I didn’t want people to stare at him.
Tackling the Tort
B’s physical therapist was AWESOME. Her name is Cindy. She showed me stretches and positions to put B in to help his neck. I was given daily “homework”; to avoid bouncers, mats, swings etc… as much as possible, to move all of his toys/stimuli to the right side of him and to stretch his neck out 8-10 times a day. During his 2nd session he cried so hard we had to stop therapy after only 10 minutes. After setting the other 2 kids up with a sitter, (Thank God for Grandma Mary!) and then rushing to the appointment just to turn around in 10 mins, I wanted to cry right along with him. That is when Cindy mentioned E.I.S- something I had never heard of. EIS is “Early Intervention Services” and it’s through the county. A child that is in need of therapy (regardless of income level) can qualify for in-home treatment, free of charge. It is a process though. We continued seeing Cindy as we waited for EIS. After the initial call, we waited 2 weeks for a meeting, then another week for an in-home assessment of Brandon’s neck and then 4 weeks to be matched with a therapist. Over those weeks he got much stronger but the torticollis was stubborn. As soon as he looked to the right his neck would snap back to the left like a rubber band.
Also, while we were in EIS limbo we had the x-rays done. A few days later I got a message from the pediatrician, “Mrs. White, we’ve reviewed Brandon’s x-rays and we would like you to make and appt to meet with a neurosurgeon at Children’s hospital. Please give us a call back”. I called Jody crying, freaking out nervous. Neurosurgeon?!?! After a stressful day of phone-tag the NP at the office assured me it was standard procedure with the x-rays, that a specialist needed to review them and discuss them, I found out they were just looking for gaps/cracks in his skull or signs that his skull was closing pre-maturely in the “trapezoid shape”, any of those would most likely lead to surgery.
Back in PT world,we were matched with a really great therapist. B’s in home sessions were going great. We started working on core & balance exercises since he would face additional challenges when learning to roll & crawl with such a severe “lean”. By 4 ½ months he was rolling both ways like a tiny champ and showing lots of strength during tummy time. His face was looking so much more even but his head shape
unfortunately just wasn’t showing much change. Every time we met a new therapist or Dr, I’d ask, “you don’t think he’ll need one of those helmets, do you?”
Helmet Stickers
Jody and I went to Children’s hospital to meet with the neurosurgeon. The good news; the xrays looked great, no signs of any major problems. The bad news; he would classify B’s plagiocephaly as severe. My stomach dropped when he started to discuss “pressure bands” (a helmet is a helmet buddy, let’s not tiptoe). The helmet is worn 23 hours a day. He said he could not tell us one way or another, what to do. As part of the plagiocephaly, B’s forehead was beginning to protrude slightly on 1 side. He said that aggressive PT and repositioning could fix B’s head but the helmet was an option, an expensive option, one that was considered mainly cosmetic, so it is hard to get approved by insurance. That’s why he doesn’t like to “force” it on parents he said. I had done my research and I know that left untreated, the plagiocephaly/facial asymmetry could lead to; vision, sinus and hearing problems, speech issues or TMJ. There were also simple things like glasses not fitting right, having an unsafe “gap” between the head and sports helmets. The Dr recommended we go home and talk about it. The thing about the helmet is that it’s time sensitive. The sooner a baby gets it on, the more effective and quickly it will work. 4-6 months being the optimal age. We were both pretty frustrated with the dr’s wishy-washy opinion. I cried a lot. It was a cycle of crying. I would kiss B’s head and cry. Then I would think of all the really sick kids at that hospital we saw and feel guilty for being so overdramatic about a helmet- then I’d cry. I’d think about B’s 1st trip to Disney and how in all the pictures he would have a helmet on and I’d cry. All the compliments he gets on his hair… and now no-one would even be able to see it… and cry. I hate to admit it but I have probably stared at kids in helmets and now people would do the same to me. Karma?... then I’d cry.
After asking advice from all my friends and B’s PT (who I trust and respect the opinion of) I decided to proceed with the helmet process. I just couldn’t take the “what-if” that his head could be fixed by PT and time. PT is only here for 45mins a week, the rest of the stretching/positioning/strengthening falls on my shoulders and I’m not a risk taker. I wanted to look back and say we did everything we could.
Univera will cover cranial orthotics at 100% if they are deemed medically necessary. If not, the cost would be somewhere around $3000 out of pocket. I spoke with the neurosurgeon’s office and they sent over B’s x-rays and evaluation to Univera right away. The next day I had to take B to the orthopedics office to have photos and dozens of head measurements done. He was not a fan. His hair is so awesome and fluffy we had to wet the poor baby down to get the pictures. Then we just had to wait.
That night I went online and looked for helmet stickers to try to cheer myself up. They actually have some pretty adorable stuff out there. I promised myself (and B) that as soon as the helmet was on that I would put on a happy smile and face it with a positive attitude. No baby needs a whiney crying mom.
Here goes nothing…
Today I got the call that Brandon does in fact, fall into the measurements for severe plagiocephaly and the helmet would be considered medically necessary by our insurance. They want him at the hospital tomorrow afternoon for a head casting. His helmet will be ready in 8-10 days.
I have a dozen emotions. I’m excited things are moving along so quickly/smoothly. I’m happy he has a good outlook for his head. I’m relieved we don’t have to scrape together $3,000. If I’m being 100% honest I’m also nervous, anxious and sad. It’s a reality now. That’s why I decided to share his little helmet journey. Although I hear it’s common, I personally have never seen a baby go through it and it’s been really emotional for me. It’s also to document change. The Dr said I may not notice a change because I’m staring at him all day ever day. I’ll post weekly progress pictures and updates. He could be in the helmet 8 weeks… it could be 8 months. Fingers crossed it works quick but I know in the grand scheme of life even 8 months is gone in the blink of an eye.
