Baby Stig

Emma Lee developed plagiocephaly, also known as an asymmetrical distortion of the skull, after her shunt surgery when she was two days old. Once the pound and a half of excess cerebral-spinal fluid was no longer in her head, both her over-stretched skin and the plates of her skull overlapped in several places. She had several flat areas; particularly on the back side of her head. She also had significant towering around the occipital fontanel (the soft spot on top of the back of her head). This towering made the occipital fontanel much greater than normal – surpassing the size of the anterior fontanel that is typically larger. For most children, the occipital fontanel usually closes in two to three months; at 19 months, Emma's is still open. However, it has been shrinking in size thanks to her STARband treatment from STAR Cranial Center.

Emma was first referred to STAR by her neurosurgeon on March 24th of 2011. At her consultation appointment on April 8th, they took a three dimensional scan of her head using the STARscanner to see if she qualified for treatment. According to health insurance policy: unless the distortion in shape is at or above a certain level (and different carriers may have different levels), it would be deemed cosmetic and not covered. Thankfully, Emma qualified. Her number (which is calculated by taking the difference between the diagonals of her head from a bird's eye view) was about 1.75 times the level that insurance required. Given the costs of the three separate helmets she has required, we wouldn't have been able to afford the STARband treatment that Emma has received if it had not been covered by insurance.

 

Emma at two and a half months old before treatment.

Children must be at least three months old before they can begin this treatment. There is always hope that repositioning can eliminate and correct any issues with the shape of a child's head, but in Emma's case, it wasn't enough. So on May 10th, she was rescanned and the new information was sent off to have her first helmet made - all white - just like the Stig from Top Gear. Much to my surprise, the lady that was going to be her Cranial Remolding Specialist was a friend I went to school with growing up. We had lost touch, as it often happens, after leaving for college, but she was always so kind and had such a good heart that I knew Emma would be well cared for. On May 23rd, she went in for her initial fitting to begin treatment with her first helmet.

First pink elephant in the herd.

The challenge we were faced with, that most patients aren't concerned about during this treatment, would be to watch her shunt and make sure there was never any pressure put on it from the helmet. This required frequent removal of her helmet to look at her skin for pink and red marks resulting from the helmet impacting the shunt. Most children wear their helmets twenty-three hours a day without any need to remove it for spot checks. But due to the fact that Emma's shunt was so crucial to her health, it had to be monitored to make sure that the treatment never restricted the abilities of the shunt or compromised its integrity.

The first helmet was a bit of a challenge for everyone involved as her head was shifting so much that she was constantly having to come in for adjustments. There were a few times that red spots were found on her shunt, which caused us to discontinue use of the helmet until we could come in for adjustments (usually the next day). For almost five months, she had weekly adjustments to keep everything working properly. Even with all of the adjustments, and some ingenuity on behalf of her Cranial Remolding Specialist, the first helmet was not going to fit her long enough for her to complete the treatment. So, after a scan was submitted to insurance still showing that Emma qualified, she continued treatment in her second helmet beginning on September 15th. This helmet was white with pale blue and pink hearts on it. I decided to have something a little different (and more "girly"), because I wanted to be able to tell the difference between helmets when looking back on her pictures.



Reaching for her giraffe, trying to make new friends.

Once she got to the point that the second helmet was reaching its limits, STAR recommended a third helmet based on her special circumstances. Emma was close to being within the normal range, but due to her developmental challenges (not sitting on her own and struggling with head control), she would still be spending significant time laying down which could cause her to have new flat spots. After all the work we had put in to correct her head shape, I agreed with their recommendation and we submitted documentation to her neurosurgeon to approve her for a third helmet. At first, his response was that her head shape was close enough to normal that he didn't see the need for her to continue treatment. This would be the first time my skills as Emma's advocate would be tested. I simply asked the doctor why he didn't agree with STAR’s assessment since it made so much sense to me. He then stated that he didn't anticipate her getting much more correction from a third helmet, but inevitably agreed to approve the request. During the time it took to get the third helmet approved and processed through insurance, Emma outgrew her second helmet and was out of treatment for a few weeks. During those weeks, the scans showed her regression and the development of some new flat spots; assuring me that we were correct to push for the third helmet. Emma got her third helmet on January 30th of this year and it is solid purple. It lasted the longest of the three simply because her head wasn't growing as quickly as it was when she was younger. This also allowed us to keep her in it until September 20th so that she wouldn't develop any more flat spots this year.


First time in her ExerSaucer - not quite sure what to do.



After completing her treatment, it amazes me, looking back, how far she has come. When I see pictures of what she looked like right after surgery up until she began treatment at three months old, I can't help but be thankful that such technology exists and that we were lucky enough to be able to have it for Emma. Not only does her head look better, but more importantly, the treatment also made sure that the alignment of things inside her head developed correctly as well. At her final appointment, we received the best news about her head shape - it was within normal range. Then, at her 18 month check up with her pediatrician, her head size was finally about to hit the top of the normal growth curve. By the time she is two, she should be in the normal range on both size and shape for her head! Now that she is helmet-free, it is time for her to feel the wind in her beautiful hair!