By Nick Clark
Ever since birth, Nolan had a preference for laying with his head leaning just a bit toward the right. No matter which way we positioned him, he somehow managed to wiggle his way back to his comfort zone. It was really no shock to us when our pediatrician recommended Mary Free Bed Rehabilitation Hospital for a head scan. The team at Mary Free Bed used flashing toys to keep him still enough to take scans of his head, which helped make the process feel effortless. Once we got the verdict that his head shape was severely outside of a normal range, the “Mom guilt” set in. How could I have prevented this? Have I failed my beautiful, sweet boy? What will the next few months feel like for him? For our family?
The orthotist at Mary Free Bed reassured us that the time will fly by, and depending on his progress, he may only need the helmet for 3-4 months. We settled on a space-themed STARband helmet and a couple of weeks later, on March 18th, had Nolan properly fitted by Melissa, our orthotist. The first few days were definitely an adjustment. Luckily several other babies in Nolan’s daycare class wore helmets, so his teachers were well-versed in the cleaning and maintenance. And he honestly didn’t even seem to notice the helmet in the beginning.
At every check-up with Melissa, we were amazed at how far he progressed and how much wearing the helmet changed the shape of his skull. We did have one hiccup – Nolan’s head was growing so quickly that his forehead was rubbed raw. Even with taking a full week off, he went right back to wearing his helmet like nothing happened.
On July 8th, we had our final appointment with Melissa. She took a final scan of his head, which showed significant improvement and is now within the normal range. We are proud of his growth, in awe of his strength and thrilled with our STARband experience.
One of the main reasons we had any reservations about Nolan wearing a helmet was how others would perceive him. Would someone look at him and ask, “What’s wrong with him?” We were so excited to be able to choose a design for his helmet; for three months and 19 days, Nolan got to be the cutest space explorer. It warmed our hearts when strangers would stop us to comment on how good he was, or how sweet he looked in his helmet. We are so grateful to the team at Mary Free Bed and also to STARband for giving Nolan the tools to grow in a healthy way.
By mom Melissa Whittington
My daughter Emilia was diagnosed early on with torticollis and plagiocephaly. At about three months old, I could see her head was a little misshapen, and she always favored one side. Our pediatrician recommended us to physical therapy right away. We worked with them for about one month, and she regained full/equal range of motion—no more torticollis! However, her head shape had not improved. I was devastated, felt like I had failed. I started doing more research on helmet therapy for babies and was so overwhelmed! Our physical therapist recommended we take her to get evaluated soon, the sooner we started, the better. So many people (some professionals and some not) told me it would probably even out eventually, or her hair would cover it one day, but I knew I would feel so guilty later on if I hadn’t at least tried.
We went to Level 4 Orthotics and Prosthetics in Columbia, Maryland. The scan only took five seconds, and the staff was amazing at distracting Emilia! Insurance covered most of the cost. A few weeks later, her helmet was ready. The instructions were not nearly as bad as I thought they would be. After a few small adjustments (Emilia’s ears were offset) we were on our way home with our STARband. I thought the first few days were going to be terrible. I was so scared. Emilia forgot it was on after about 45 minutes. We were doing great. She did have a little trouble sleeping the first few nights but only because she was too hot (user error–took her out of her sleepsack and we were golden!). We followed up at the office about every couple of weeks to get readjusted. The staff was amazing, we were able to email or call with any questions, and they were so supportive. I also joined a Facebook support group, and it was amazing to see all the success stories from other families.
Then came new worries, what would people think? Would they think there was something wrong with her? And most importantly, no more bows?! People did ask, A LOT, more than I was expecting, but I had no problem explaining to them how her STARband was fixing her noggin. People were curious, but I also believe helmet therapy is becoming more common. Also, I found a lovely Etsy shop (Avery’s band bows) that made Velcro bows, especially for helmets. Nothing a bow can’t fix! After one week in the helmet, I could see a difference, ONE WEEK. At that moment, I knew it was all going to be worth it, and I made the right decision. My baby girl wouldn’t have to ever be self-conscious over her head. There was a light at the end of the tunnel. Every single week I noticed her head was getting better and better.
Emilia was in her helmet for three short months. It flew by so quickly. Her head looks amazing, and her ears are no longer offset. We would have never achieved this without her STARband. EVER. I have zero regrets about our decision to put her in a helmet. I would do it again and will do it again if any future children have similar issues. As usual, it was harder for me as a parent than it was for her. It became our new normal, and now we are done! Can’t thank Level 4 enough.
By mom Alyssa Bloomquist
Ever since she was born, our daughter Tessa had a preference to look to one side. Despite trying to keep her off that side during tummy time and other activities, she always gravitated to that side even when we tried to reposition her (especially when she slept at night). Although this preference eventually went away, a flat spot on her head remained. As a first time mom, I was extremely worried, so our pediatrician referred us to the Prisma Health Center for Prosthetics and Orthotics in our city of Greenville, South Carolina. Jeanne-Marie, the orthotist, put something that looked like a sock on Tessa’s head to flatten her hair to scan her head. Tessa’s measurements fell outside of the “normal” range, and Jeanne-Marie recommended a STARband helmet to help round her head out.
At first, I wasn’t sure if we had made the right decision. I didn’t want people to look at our baby and think there was something “wrong” with her, but I also didn’t want to ignore what I had been worried about for months, and would probably always think about if we did nothing. So we went forward with the STARband treatment when she was about 6.5 months old. Tessa was unsure of it at first, but after day 1, she didn’t even seem bothered by it! Since she did not have to sleep in her STARband for the first few days as we increased her wearing time, I took that first night as an opportunity to paint her helmet. I painted it all over with a gold floral design on top of a white background so that she could be stylish during those few months! All of my worries about other people’s perceptions quickly went away, as people only had positive things to say. We heard a lot of, “she looks so cute in her helmet!” and “I love the design she has!” The good thing was that Tessa didn’t mind it either, and she slept through the night while wearing it just fine.
We went back to Prisma Health Center for Prosthetics and Orthotics every two weeks to get Tessa’s helmet adjusted and carved out to give her head more room to grow in the right areas. Each visit was a pleasant experience, and we felt reassured that Tessa was growing in the right direction. We were pretty strict in following the STARband wearing schedule of 23 hours a day. Tessa had it on all the time except for an hour in the evenings before bed, when we gave her baths and cleaned the inside of the helmet with rubbing alcohol. We did have a few exceptions when we went swimming, but we made sure to put it right back on once we were done and dry. She didn’t seem to notice that she had it on, and had no trouble sleeping, riding in the car seat, or stroller with her helmet on. She did get a little itchy and scratch her head during her hour without it, but it never made her upset. After a few weeks, we had our first progress scan and were able to see the outline of Tessa’s head at present over the outline of her head before treatment. It was exciting to see the progress she had already made! By the end of two months wearing the helmet, Tessa met her measurement goals, and we were told she didn’t need to wear it anymore!
When it was all said and done, we felt glad that we went ahead with the STARband to help round out Tessa’s head. It was such a short period in her sweet little babyhood, and we don’t have to worry about how her head is growing anymore. We sure are proud of our little girl!
By mom Jenna Wustman
By the time Jack was two months old, we noticed his head shape was getting more and more flat. He also had reflux pretty bad so tummy time was always pretty miserable for him (and us) as he would just lay there vomiting and screaming.
The pediatrician noticed the flatness at two months and said if it didn’t improve by his four-month appointment, he would give us a referral to get scanned to see if he needed a cranial remolding orthosis.
We tried a head-shaping pillow, constantly readjusting his head and switching sides, but despite our best efforts, it continued to get worse. We also tried craniosacral therapy about every other week for those two months as I tried my best to avoid him having to get a STARband; it didn’t seem
to help much.
We went to Mary Free Bed Orthotics & Prosthetics in Grand Rapids, Michigan, on December 24 for Jack’s first scan and diagnosis. At that time, he was about five months old, and his head was on the moderate scale as far as severity goes, and would only need to wear it for about three-four months. So, we chose to move forward, and orthotist and cranial remolding specialist Brent Tuinstra set up his appointment to receive his STARband on January 18.
I cried, worried about what others would think and how to explain it to people, especially family. But I knew this is what would be best for Jack. I think having a cranial remolding orthosis is a more common occurrence in this generation, but older generations find it so foreign it needs more explanation. Thankfully our family was very sympathetic and understanding about the situation and ended up being very supportive in helping care for Jack throughout
Jack received his STARband on January 18 and followed the wearing schedule, slowly working him into the adjustment. We opted for a white helmet with a black band knowing we would want to decorate it eventually! Jack did surprisingly well in getting acquainted with his helmet; many even commented on how cute he looked in it! We were very strict about sticking to his schedule and him only having it off for one hour a day, despite having to explain to the family that even though he isn’t laying down all day – his head is still growing; therefore he needs to keep it on.
Overall, our experience with the STARband was much better than anticipated! Anytime someone asked about Jack’s STARband, we were happy to tell them how much his head is improving and how well he does with it on! He honestly never had any issues with it, we had no problem cleaning it, and he never had any reactions at all! Both our orthotists were great—Jack went in for regular check-ups and adjustments every three-four weeks, we were eventually switched to Doug Richardson (another orthotist and cranial remolding specialist) to finish out his time in the helmet, and he finally got it off about four months later on May 10! Although I was initially upset and nervous about him needing a STARband, I am so glad we went through with it and are thrilled with how great Jack’s head looks now!
By mom Mallory Williams
The fall of 2017 will remain in my heart forever! After struggling for years to become parents, we were finally able to adopt our sons through foster care and found out we were pregnant through IVF. We were so grateful for our forming family when we found out I was expecting, not only one baby but THREE! Triplets, how exciting? My pregnancy was smooth, aside from the discomfort of carrying three babies. We made it to our scheduled c-section and welcomed our beautiful daughters Avery, Emery, and Bradley!
People noticed Bradley’s flat head pretty early on. As her mama, I was very sensitive about it. I would brush it off but, at our first evaluation with Early Intervention, they diagnosed Bradley with torticollis. They educated me about what it was and how we can treat it. We started physical therapy, and my goal quickly became to avoid getting a helmet. I hated everything about helmets. I know what I thought when I looked at babies in helmets, and I couldn’t stand the thought of what people would think of mine. It was difficult doing the physical therapy exercises, but we powered through. We saw some improvement. She was three months old when we had an appointment with The Children’s Hospital of Pittsburgh’s plastic surgery department. We met with Regina Fenton, CRNP. She was real with me and said that Bradley’s head was severe and she expected us to qualify for a helmet. Since Bradley was too little, she asked us to come back when she turned six months old. She suggested bringing my other daughters in as well to get a quick measurement. It’s common in multiples to need helmets. Since the babies don’t have extra room when they are developing in utero!
We continued with PT and all our exercises. During our six month appointment with the plastic surgeon, Bradley and Avery were referred to Union Orthotics and Prosthetics Co. I was stressed out thinking about having TWO babies in helmets. Our insurance would not cover the helmet, so we had to apply for extra funding. The process took a few weeks, and we scheduled our evaluation at Union. We met with Sarah W. Katchpole, CO, MSPO our first visit. Avery and Bradley had to get funky hats on their head so they could take accurate measurements. Thankfully Avery scored a 4 and did not qualify for a helmet. Bradley scored a 10.1, so we placed an order for her helmet. Then we waited for it to come in!
December 15th, 2018, was day one. My husband and I took Bradley to pick up her helmet. We decided on a clear one because we heard it was the easiest to clean. It was harder to decorate, but with five kids, whatever was easier! I contacted Babbleworthy and Avery’s Bows to help me make her helmet fun. It was affordable and easy for this crazy momma to do! The first few days were difficult. Bradley had a mild teething fever, and of course, we were going on a trip to an indoor water park as an early Christmas present from my in-laws. It didn’t take long for her to adjust to the new helmet. Soon it became second nature to us. It was hard for me not to be able to kiss her head, and I enjoyed taking it off after dinner. The nightly baths were nice one-on-one time for us. We bought a spray bottle and filled it with rubbing alcohol. We would spray it down then wipe clean. Even with all the decals, it stayed pretty clean. I enjoyed going for check in’s for Bradley’s helmet. I loved seeing the process!
At two months, I was getting a little fed up with it. Bradley was getting bigger, and the helmet was starting to annoy her. We met with Tori Andrews, Certified Prosthetist Orthotist, for one of our last check-ins. She was pretty impressed with her improvement and informed me that we could choose to graduate. As wonderful as that sounded, I wanted to complete! We agreed to give it two more weeks and discharge. The last two weeks felt like it took forever, but we made it. Bradley’s final scan measured her at 2.0. I was in shock! We are very proud of Brad and excited to move forward! We are very thankful for the support from Union Orthotics and Prosthetics Co. in Canonsburg as well as The Children’s Hospital in Pittsburgh! It felt like an eternity while we were going through it, but now that it’s over, I realize it was only a short period of our lives.
By mom Christine Rokos
In the first few weeks of my son’s life, we realized that he had a strong preference turning his head to one particular side. No matter what I would do, every time I laid him down in his bassinet, he would shift his head to the right side. I started seeing the preference in the car seat carrier, in the swing, and even when he was laying on the ground playing on his mat. I would gently nudge his head to the other side, but he would always go back to his preferred side. Honestly, I didn’t think anything of it at the time.
When my son was two months old, I started noticing that the back-right side of his head was flattening out because of his preference to lean to one side (torticollis). So during the two-month wellness checkup, I brought it up to our pediatrician. She assured me that lots of babies get flat spots, and it will correct itself out by nine months.
By four months old, the flat spot wasn’t getting any better and in many ways, it had gotten much worse. We were then referred to a neurosurgeon who officially diagnosed our son with plagiocephaly or “flat head syndrome” and suggested that we have an evaluation at a cranial clinic. I had no idea what to expect when we arrived at the Hanger clinic in Peoria, Illinois, but Rachel the Orthosis was so helpful in making our son feel comfortable while they got a super quick scan of his head shape.
“I would highly recommend
the STARband to any family out there who may be going through the same thing that our family went through. My son’s head has shaped out beautifully,
and our journey was quick!”
— Christine Rokos
All of the measurements and discussion lead us down the path to deciding to place our son in a cranial STARband helmet, and I can honestly say that it was the best decision we could have made. I could rest easy knowing that the helmet would correct the flat spot vs. the wait and see approach. If my child’s head never rounded out on its own, then what?
The helmet did not seem to bother our son at all. I was worried that he wouldn’t adjust during overnight sleep, but the first night he actually slept the longest he ever had. The STARband helmet was also much lighter than I had imagined. Furthermore, it was also so much easier to pull on and off that I had anticipated.
During our helmet journey, our little guy was growing, which meant his head was growing, and therefore we had to have adjustments made on the helmet. The staff at our clinic was absolutely wonderful in making same-day adjustments and talking us through any questions we had. They estimated my son would be in a helmet for 3-4 months, but because of our proactiveness, and the expertise the orthotists had with the STARband, he only had to be in the helmet for 2 months!
I wrote an article 12 things to remember when baby is in a helmet. To help ease any fears, you may have while your child is in the helmet; and get a better idea what to expect. The time in the helmet goes much, much quicker than you would imagine.
By mom Megan Noseworthy
Griffin was born nearly 2 months premature with more hair than your typical 3 year old. She was born with very little complication and was able to come home from the hospital very soon! She ate, she slept and was an all around wonderful baby! At her month 3 immunizations, our nurse alerted us to what she described as a flat spot! We had never heard of this and were really unconcerned at that time. It wasn’t until a follow up appointment that our eyes were opened to an obvious malformation of her head. Perhaps we were blinded by baby bliss or maybe it really was her hair that was able to mask the issue.
We began therapy right away and the next few months were a constant barrage of physio appointments, at home repositioning, purchases of head pillows and tortle hats and the list goes on. It became a part of our everyday to try and ensure pressure to the opposite side of her head.
Each appointment would come and go and her measurements would gradually become worse despite our best efforts. It was at this moment that panic and fear set in as a parent.
At what would be one of our final physiotherapy appointments, the topic of a cranial band was discussed. It was a no brainer for us, if there was something that could potentially correct this, we were all for it!
From that moment on things went quickly. Tests, casting, fittings and boom—a helmet!
We were warned by our physician that the first days would not be pleasant and that it would take some time to get to the 23 hours of wear per day, but luckily for us she was a complete trooper and didn’t seem phased by her new headwear!
Move forward 6 months and Griffins head shape was more perfect than I could have ever imagined and we have STARband to thank for this!
STARband has been one of the best things we could have ever done for our daughter! For any parent considering this as a method, just do it! You will not regret it!