A Message from Kaylie and Danny’s Mom, Niki Jurgelewicz...

During the last few months of my twin pregnancy, Kaylie was pretty much stuck in one position. She was positioned so far down that the ultrasound technician could not even measure her head. It seemed that her brother, Danny, was taking up all the room and he was constantly moving. Finally, Danny settled in a breech position and the twins were born at 36 weeks. Thankfully, they never saw the inside of the neonatal intensive care unit (NICU).

Kaylie was always very still and was constantly looking to the left. It never occurred to me that this would cause a problem. One day, my mom was watching the kids for me and when I got home she pointed out that Kaylie’s head seemed a little flat on the left side. When I looked at Kay, I couldn’t believe that I hadn’t noticed this flatness before and what concerned me even more was the positioning of her ears... one was higher and more forward on her head than the other. From that point on my husband and I tried aggressively repositioning her. No matter what we did, she continued to turn her head to the left.

At three months of age, the twins had an appointment with their pediatrician. After I pointed out the shape of Kaylie’s head to him, he gave me the all too familiar line “It will round out on its own!” So we returned home and continued repositioning.

One day while I had Danny sitting on my lap, I was shocked to see that his head was flat also except Danny’s flatness was directly across the entire back of his head. The flatness was causing his head to grow upwards, almost into a cone-shape. So just as I had done with Kaylie, I tried repositioning Danny and increasing tummy time, but he would scream the entire time and he hated being on his belly.

I would later learn that Danny had deformational brachycephaly and Kaylie had deformational plagiocephaly. Then it was my mom to the rescue again! One day at work she stumbled upon a new website at iwon.com. The headline story was about babies having stiff necks (i.e. torticollis) causing their heads to become flattened. From that moment on, my mother and I printed out any information we could find on torticollis and plagiocephaly.

Unfortunately, the only “cure” for deformational plagiocephaly - if repositioning didn’t work - was helmet or band therapy. I don’t say unfortunately because I was against banding, I say it because the only banding information I could find was on DOC bands made by Cranial Technologies. The DOC band was never really an option for us. The travel alone made us realize that we couldn’t use this product. There was no way I could drive two hours one way every other week with my twins plus my older two sons who are 5 and 2 1/2 years old. We also had to think and plan rationally about the cost in case our insurance didn’t cover the bands. Needing two bands, we were looking at spending a possible $6000, something that was way out of reach for us. I felt so discouraged. I felt like I was failing my kids.

At five months of age, the twins returned to the pediatrician’s office. We were given the number of a neurosurgeon at St. Christopher’s Hospital and set up an appointment with him for the following week. Our first appointment with the neurosurgeon ended with him telling us to try repositioning (again!) for another month. When we returned to the neurosurgeon the following month, he reluctantly wrote the prescription for the STARband even though he felt we shouldn’t band our twins. We were positive that we should!

During our first appointment at Harry J. Lawall & Son in Philidelphia, our orthotist, Bud, told us about a company in Florida called Orthomerica who are the manufacturers of the STARband cranial remolding orthosis. Bud explained to us how the STARband works and, in case our insurance company didn’t cover it, the STAR was a fraction of the cost of the DOC band. But to me, the best news was hearing that our orthotist had many years experience treating babies with deformational plagiocephaly.

The casting process was a little nerve wracking, but thankfully was over quickly. In a short period of time, our custom made STARbands were ready for their first fitting and it has been smooth sailing ever since! Anytime I had a question, Bud always took the time to sit down and explain things to me. It didn’t matter how crowded his waiting room was and he never rushed us. Bud made sure that all of my concerns were addressed at every visit. Every company should be so lucky to have such a wonderful person representing their name! He is a true asset to Harry J. Lawall & Son and Orthomerica!

We have had the twins in their bands for three months and in that time we have seen remarkable results! In fact, Danny is done and no longer needs to wear his STARband! Looking at his head now, no one would know that he didn’t always have such a beautifully rounded head. I love looking at Kaylie’s head and seeing that her ears are in better alignment. I love knowing that her head is rounding out just as nicely as Danny’s.

I know getting my babies banded was the right thing to do and I am just so happy that Orthomerica is out there making it easier for me to do my job as a mommy and do what is right for my kids. But most of all I love that the STARbands made this possible! My kids will most likely never remember having to wear their bands, but I will never forget this wonderful and educational endeavor.

Thank you, Orthomerica!

Sincerely, Niki Jurgelewicz