A few days later, Larry was holding Grayden on the couch and said, "I'm worried about his head. It's really flat on this side." Ren only ate 1 ounce this afternoon. I should order those bottles. I wish there was a sleep fairy. "Um-hmm," I said. "The doctor said we should move his head when he falls asleep, but he obviously doesn't have twins, because I am not going in there and waking up two babies."
A couple of weeks later, after the fog had lifted, I was holding Grayden on the couch and looked down on his head from above. I was shocked by what I saw. His head was FLAT! Why hadn't I noticed this before? Why didn't the doctor do something about it? I set him down and grabbed Ren. His head was flat, too! How did this happen? I had been vigilant about both boys spending at least 30 minutes a day on their tummy.
As soon as they went down for their nap, I ran to the computer and called up Dr. Google. Grayden clearly had deformational plagiocephaly, while Ren had a nice mix of plagiocephaly and brachycephaly. I learned that preemies are especially susceptible to flat heads because their skull bones are still so soft at birth. Twins tend to have issues more often, too, simply because one baby is almost always lying flat when the other is held. And the "Back-to-Sleep" campaign of the 1990s had been successful in reducing the number of crib deaths due to SIDS, but it was directly responsible for an extreme increase in infants with head deformities.
I read that babies with torticollis often end up with plagiocephaly, too. When I googled "torticollis," I got the following result:
"Torticollis is a twisted neck in which the head is tipped to one side, while the chin is turned to the other."
Huh. Ren always looked to the right. He had since he was born. Was that torticollis?
Plagiocephaly and torticollis were not only a cosmetic concern. Children who were left untreated tended to have chronic ear infections, misaligned jaws, and vision problems. The thought of Ren and Grayden having to deal with such issues broke my heart.
I wrote down all of my questions for their four month wellness visit and studied a pamphlet on repositioning techniques. I rearranged the furniture to help encourage them to look in the opposite direction of their flat spot. I bought pillows to put in their swing, carseats, and bouncers. And for the next 6 weeks, I forced them to lay on the rounded part of the head---when they were awake and when they were asleep.
But their heads were only getting worse. Plus, it was starting to affect the symmetry of their little faces. Ren's right ear protruded farther than the left, and both boys had cheeks and eyes that were smaller than their counterparts. You could also see where their foreheads were protruding; their heads really were starting to resemble the parallelograms that classically define plagiocephaly.
The next step was getting a referral to an orthotist, who would measure their heads and then recommend a plan of treatment. The most common "cure" is a molded helmet that puts pressure on protruding sides and leaves space over the flat parts for the head to fill out. The earlier you seek treatment, the better. Babies who start wearing helmets before 6 months of age tend to graduate in just three months, while older patients have to wear the helmets much longer. I became a woman possessed. The second to last thing in the world I wanted was for my babies to wear a heavy helmet in the hot South Carolina summer for 23 hours a day. But the last thing in the world I wanted was my teenage sons asking me why I didn't do anything about their flat heads.
The helmets are rarely covered by insurance and run about $3000 each. We have contemplated several ventures in the last three years that run about $6000; a fence, a deck, landscaping, hardwood floors, a fishing boat. I have vetoed all of them with "We don't have that kind of money." Oddly, I didn't think twice about spending it on our sons. They may not go to college, but they'll have perfect heads!
Through the Soccer Mom grapevine (which is so valuable in a small town), I learned that my current pediatrician refused to refer babies to an orthotist for helmets. But there was another pediatrician in the practice who was more willing to acknowledge plagiocephaly, so I quickly switched our appointment to the new pediatrician. When she saw the boys at 4 1/2 months, she agreed that there was an issue. I assumed she would recommend an orthotist in Savannah or Charleston, but instead she referred us to Physical Therapy. She said the Physical Therapist would refer us for helmets. Hmmm.
We then had to wait 2 weeks to get into the therapy clinic. I felt like I could see my boys' heads getting flatter each day. I was trying to be so proactive and seek treatment as quickly as possible, but I was running into countless delays!
The Physical Therapist agreed that they had torticollis and plagiocephaly (SHOCKER!). She requested that they return twice a month for therapy on their necks, and that an orthotist would come in at their next appointment in two weeks to take a cast of their head for a helmet fitting. I knew from my research that it takes about 2 weeks to get a helmet after a fitting if you don't involve the insurance companies. If you do involve insurance companies, it can take 4 weeks! So I was looking at another MONTH at the minimum before the boys would be in helmets.
I also knew from my research that the best way to measure their heads was with a special scanning machine that took computerized images in just 2 seconds. Why would I make my babies endure a plaster cast molding if I could just take them to a place with a scanning machine? I got home from their therapy appointment and called a specialist in Charleston.
It proved to be a great decision. The orthotist in Charleston took their measurements, showed me their pictures, and then did the most amazing thing: he didn't sell me helmets. He knew that I was a concerned mom who was willing to dish out thousands of dollars on the spot. But he said "Let's wait 5 weeks and remeasure them. If they are getting worse, we'll get the helmets. If they're getting better, then I saved them from having to wear helmets and I saved you from having to pay for them."
If the pediatrician or Physical Therapist had told me to wait, I would have (and probably did) bulldozed right over them in an attempt to get a second opinion. But when a person who specializes in the field tells you to wait, you can breath a sigh of relief and know that you're doing your best as a parent. My TMJ has cleared up significantly since this appointment.
I still worry that by waiting I will have postponed the helmet wearing until the worst part of summer. Or that they might have to wear the helmet an extra month. But if we go back and prove that their heads are indeed getting worse, at least I'll know I am making the right decision. And if their heads are getting better, then maybe Larry and I can get that new fishing boat. Okay, okay, we'll set up the college funds.
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