Hellobee

As difficult as it is to say, I would be lying if I didn’t say that cost was a factor in our decision-making process. Children’s Hospital told us on several occasions that the helmet would cost $3500 and we could potentially need two. They also explained that there would be weekly visits for the duration of the helmet therapy.

The first thing I did was get the diagnostic codes for plagiocephaly and the orthotic code for the starband helmet. These codes would give me a definitive yes or no answer from my insurance company regarding coverage. From there, I learned that our insurance required prior authorization. They would cover the helmet if Charlotte met certain criteria. For insurance purposes, she had to have a 6mm abnormality, be over 3 months of age, and have tried physical therapy with no success in terms of improvement. The orthotic company would handle the authorization process for us, and needed copies of our doctor’s notes in order to proceed.

Then I called the orthotic company to find out actual costs in case our insurance denied authorization for the helmet for some reason. I learned that the total out of pocket expense is a flat rate of $2000 – and that includes all helmets and all office visits. I have no idea where Children’s got “$3500 per helmet plus the cost of weekly visits.” Perhaps they err on the side of caution, but let’s put it this way: they work exclusively with one orthotic company, and at the very least we could have been told “we can’t speak for the costs, so you may want to give them a call to find out.” Children’s spoke of the costs so confidently and matter of factly that we never once questioned it. We took their word for it! After all, this is what they do every day…

And, finally, I learned that the orthotic company would have to collect payment in full up front, regardless if we paid through insurance or out of pocket. It was a lot of money to cough up at once, so we started discussing financial plans and how we’d swing writing a check for $2,000 in one day. Even though our insurance covered the orthotic device, we have a $1500 deductible and 20% coinsurance, so our out of pocket cost, if insurance approved the helmet, was $1900.

The next step for us was having Charlotte’s head measured with a laser to determine if she actually qualified for the helmet. We had been so aggressive with repositioning and had noticed a huge difference in her head shape, so we were pretty confident that she wouldn’t need a helmet. I was oddly looking forward to her appointment and was sure she’d be measured and we’d learn she wouldn’t qualify!

Sisters playing together

The week we went for our measurement appointment was a whirlwind of emotions and a flurry of events. We’d been dealing with two sick children and didn’t spend nearly enough time researching questions to ask at this appointment. My husband had a meeting he couldn’t get out of at work that day, too, so my mom came along to the appointment instead. I didn’t think it would be a big deal. I expected us to get her head measured, meet with Children’s to get the results and make a decision with my husband at a later date. Unfortunately, that isn’t close to what happened.

My gut said I didn’t want my baby in a helmet, so I was already biased. We had done a lot of research and read many studies that supported the data that helmet therapy likely wasn’t necessary, and yet here I was at an appointment for one.

The technician spent more time talking about how we could personalize the helmet than anything else – and that’s when I realized that I was at the appointment. I was faced with making an immediate decision. There wouldn’t be any consult with Children’s Hospital again because *this was it* and I wasn’t the least bit prepared.

The technician measured Charlotte’s head in two seconds flat – literally – with a really awesome laser machine that took a 3D image of her head. He instantly had measurements on his computer screen, so we had definitive results. Children’s had been using a wooden caliper, and gave us a measurement of 9.2mm assymetry. This laser machine was accurate, and gave us a measurement of 9.3mm asymmetry. The technician then measured Charlotte’s head with a caliper and got an asymmetry of 12mm – so it was interesting to see the difference in measurements. It made me wonder if the doctors at Children’s would have gotten a higher measurement if Charlotte had been sitting still, and the 9.2 was an improvement with PT. We will never know!

Based on the laser results, she qualified for the helmet. And right then and there, the technician wanted to know if I wanted the clear or solid colored helmet design. Whoa!

He went over the side effects and risks associated with the helmet, like skin irritation and that she’d have to wear it for about five months. He explained the manufacturing process and how fittings would work, and how we’d address skin irritation issues. And the more he talked, the more my heart sank and my stomach churned. I just didn’t have a good feeling about this at all. It wasn’t sitting right with me.

I asked him to print out the 3D graph of her head so I could show the images to my husband and talk about it with him over the weekend. Before we left, someone from their financial department literally cornered me (my kids had their coats on and Charlotte was in her car seat!) and wanted to know if I’d be paying by check or credit card, and had already pulled our insurance to see what our deductible balance was. I felt like I was being faced with all kinds of now-now-now decisions when I hadn’t even had a chance to talk to my husband or look at my bank account.

That evening, I texted my PT. She gave me the phone number of a local mom whose children she treats. Her twins needed helmets, and she chose to get helmets but ended helmet therapy after one month. The mom and I chatted throughout the weekend and she validated my concerns, shared their story with me, and explained why they decided not to continue with helmet therapy. Before we were finished with our conversation, I told my husband that it had changed my mind and in my heart I couldn’t do this.

Since we needed to make a split decision, I met with our ped on that Monday. He looked at the doctors’ notes and pointed out a lot of discrepancies. One of the doctors said that Charlotte had plagio, but not torticollis. The other doctor said she had right torticollis, but had verbally told me she had left. They both said she required helmet therapy but verbally told us she didn’t. The nurse said her plagio was so severe they rated it a 3 on a scale of 1-4, with 4 being most severe. It was such a discrepancy I called their office to see if they sent me notes from another patient! The nurses’ notes said Charlie had plagio and torticollis. I didn’t understand how their notes could be together but have two conflicting diagnoses.

Our pediatrician said that the risks outweigh the benefits for Charlotte, and cited a few studies (some that we’d read, too) that say in kids with minor plagio, by age 2, you cannot tell the difference in a kid who had helmet therapy and a kid who didn’t. My husband works in rehab science so he spoke to a few doctors at work, and they all said the same thing — don’t do the helmet. His coworker’s dad used to work at this particular orthotic lab and left. It all just seemed so fishy, especially for such a minor assymetry.

When I asked the orthotic lab what constitutes as a normal head shape, he told me that there is no baseline. He said he and I could have 6mm assymetrical heads and not know it! For insurance purposes, they say anything over 6mm is abnormal. Charlotte had a 9mm assymetry, and he suspected with 5 months of helmet therapy he could correct her to a 7! In Charlotte’s particular case, this was also strictly cosmetic. Her facial features, including her ears, were found to be in perfect alignment. That was definitely a contributing factor in our decision making!

So, that Tuesday, my husband called the orthotic company and said we decided against the helmet. They simply said, “okay! We will put a note in her file!” and that was it. No follow ups from them or Children’s Hospital, and it’s been three whole months! We never got a letter from our insurance saying if she was approved or denied, either.