Every parent of a child with plagiocephaly has a story to share. Below are some stories from parents like you – loving parents who care about their children and who will stop at nothing to give them what they need.
We hope you find these stories encouraging and helpful. If you would like to benefit other parents by sharing your own story, we would love to hear it! Please contact us to share your story with plagiocephaly.
Our sweet baby boy was born March 16, 2014 in Phoenix, Arizona. Labor was a whopping 19 hours and then came Dylan, born at 7.4 pounds and 21.5 inches long. Delivery was very routine, however the first thing we noticed about Dylan is how his head was very much cocked to the left side. Over the next 4 months his head always had a slight tilt and tummy time was completely impossible. Dylan would cry in pain and looked like he was trying to lift a hundred pound head. It was his pediatrician that informed us Dylan had torticollis.
Congenital torticollis is most often due to tightness in the muscle that connects the breastbone and the collarbone to the skull. This tightness was developed because of the way Dylan was positioned in my uterus. I always felt that he favored one side of my stomach through my pregnancy. Because Dylan had this he was really only comfortable playing on his back which caused him to have a very flat head. His pediatrician advised us to help him stretch his neck with different holding positions and guiding him to look in the direction that was uncomfortable by waving or shaking his favorite toy to the other side.
It wasn’t enough and that was when we were told Dylan would need to get a cranial helmet. His insurance however required 8 weeks of physical therapy, once a week for 30 minutes before they would shell out the $2,500-4,000 for a helmet. Our sessions consisted of Dylan, his father, me, and his physical therapist sitting on a big mat while she helped guide him in his first efforts of crawling, rolling over to the right, repetitively. It was all the normal things a 6 month old was doing in their own home but teaching Dylan to not only use the left side of his body which was what he was comfortable with and used to.
After those 8 weeks, his physical therapist recommended in her notes to his insurance that Dylan still should get a helmet. After a few weeks of waiting on approval for the helmet Dylan’s insurance gave us the ok. After a couple appointments and some measurements Dylan was fitted with his Dodger Blue helmet. This child truly could not have adapted better to his helmet. It’s like he doesn’t even realize it’s on. I have to say one of my biggest fears was to catch people staring. Because, as a mother, I want to protect Dylan from weird looks. He is going on week 2 of wearing his helmet and I’ll admit we get stares at the market or going for a walk in the neighborhood. But on the flip side I also get parents that stop me and say their kid had a cranial band and encourage me that yes it can be difficult at times but completely worth it in the end.
What is so inspiring is to see how a baby isn’t defeated easily, intimidated or embarrassed. He wears his helmet so proudly. One key thing I was told when he got his helmet is your child will react and have the same attitude you have towards the helmet. Every time I put it on him I tell Dylan how cool it looks or how handsome he is with his special hat. I constantly praise him with it on. We have a long journey with the helmet and summer is right around the corner, but knowing this is the best thing for Dylan makes it so worth while.
At our son’s 6 week check-up, the pediatrician opened the door to the room we were in and immediately said, “Plagiocephaly! Your son has Plagiocephaly!”
Astounded by his abrupt diagnosis, my husband and I looked at one another in a blank questionable stare. Our pediatrician proceeded to share with us that our son had ‘flat-head’ syndrome, and a helmet would be necessary.
The day after Father’s Day of 2012, we made a trip to Pasadena to get Andy’s helmet. A day I will never forget. Our minimum of a six month journey was about to begin. The six months of Andy having to wear his helmet were filled with ups and downs, tears and frustration, and visits to the orthopedic and physical therapy. Our struggles and frustrations soon turned to triumphs and victories.
The snuggles with our baby boy were interrupted by a hard, plastic helmet. His poor head was always hot and sweaty, especially since he was wearing his helmet in the heat of summer.
Wherever we went, people would stare. People would walk by us and make comments under their breath. Other people were more abrupt and would ask, “what is wrong with your son?”
A sense of defeat! A feeling of helplessness! At times I wouldn’t go anywhere, because I didn’t want people to see my baby with a helmet on his head. I didn’t want to be questioned as to what was the matter with my baby, or I didn’t want to be judged by others thinking that I was a bad mom.
Am I glad that we decided to have Andy wear a helmet? Absolutely! I look back now and Thank God for this experience. It not only did the helmet drastically change the shape of our son’s head, it helped us realize how valuable this process is.
We still have Andy’s helmet and we show it to him often. We tell him why he had to wear his helmet. There have been a few times that we have seen babies wearing helmets, and Andy (now 2 1/2 years old), shares with the families that he too had to wear a helmet and that his head feels much better.
I was very aware of Plagiocephaly when I had both of my boys. I knew of a few friends whose kids wore cranial bands, so I made an effort to have both boys engage in daily tummy time….that was all I really knew about Plagiocephaly at the time. I thought if they engage in tummy time, having a flat spot on my son’s head would be prevented.
I started to notice a flat spot on Grant’s head after his 4 month check up, so I made another appointment to see my pediatrician. He agreed with me that Grant did have a flat spot on his head and recommended physical therapy for Grant. My initial reaction to that was “my 4 month old son needs to go to physical therapy?” He assured me that there was nothing wrong with his brain development, which made me feel a lot better, but mentioned that Grant might have stiffening on one side of his neck (a condition called Torticollis) which makes him prefer one side while sleeping and causing the flat spot….physical therapy could help. He also said Grant may have favored one side in the womb as well.
With my physical therapy prescription in hand, I left the office feeling a little overwhelmed and questioning if I was doing enough tummy time with him. We started going to physical therapy weekly, working on neck exercises for torticollis babies. Therapy was going great at the office and at home daily but the flat spot on Grant’s head was not getting that much better. We were nearing Grants 6 month appointment so I decided to go see a Cranial Band Specialist so I would have some information to share with my doctor and make a decision on whether Grant needed a cranial band.
I called a few friends whose babies also wore a cranial band and they all suggested I call Cranial Technologies, as they had excellent experiences with them. I felt a little more at ease after speaking with my friends about their journey, and that the cranial band did not bother their children nor interrupt their daily lives or sleeping.
Our initial appointment could not have gone better. After we took the measurements, the clinician came back into our room and said that Grant had a moderate to severe case of Plagiocephaly and recommended that he wear a cranial band. Our clinician was very sweet and put me at ease answering all my questions. She shared that sometimes this condition can fix itself since the brain is still molding up until 18 months old, however with Grants measurements it would be best to start treatment. I am very thankful that this condition is not life threatening, and can be improved with treatment. My heart goes out to parents with children fighting life threatening conditions.
Grant has worn his band now for 10 weeks and the process has been extremely smooth….. I’m thankful for Cranial Technologies and my friends whose babies wore cranial helmets to support me during this process. I am also thankful for meeting Jaymee Stocks in the office a few weeks ago and learning more about The Halo Project. We are hopeful for a successful outcome at the end of treatment!
Kathen and Koen’s Story:
On March 9, 2013 our identical twin boys were born via emergency caesarian section at thirty three weeks, five days at St. Jude Hospital in Fullerton CA. Baby A, Kathan was born first at 4:20 am weighing in at 3 pounds, 12 ounces. Baby B, Koen was born a minute later weighting in at 4 pounds 6 ounces. On one of my first visits to the NICU to see the boys my husband said to me “look at Kathan’s head, he looks like he has some sort of syndrome, or something’s not right.” As I studied his head, I did notice his head was flat in the back. However, his head was so small (the size of a tennis ball) that I just figured he needed to grow. Since my husband was so worried I brought it up to the nurse and she assured us he was perfectly healthy.
She then went on to say that the boys would both probably need helmets if their heads didn’t correct themselves. During the later stages of my pregnancy, both boys were positioned “head down.” Inside the womb their tiny heads took on the internal shape of my pelvis. The more we looked at the boys we did notice that Koen also had a small bump on his forehead and a small flat spot on the backside of his head. Had the boys been born vaginally these issues might have corrected themselves. Regardless of their head shapes, we both felt so blessed that we had two healthy boys and were primarily concerned with getting them home from the NICU.
Over the next few weeks at home, we were able to identify the boys by their head shapes. We knew Kathan’s head had the flattening on the back and was bigger on the sides. Koen’s head was pointy in the front above his right eye and slanted on the left side rear occipital region. At their six week checkup they looked great and were putting on weight, both boys suffered from a bit of acid reflux but were otherwise healthy. Again my husband brought up the boys head shapes to our pediatrician and he agreed that they would eventually have to wear helmets. He wasn’t worried about their head shapes at that point in time, primarily because he wanted to get their reflux taken care of before adding helmets to already fussy babies. To both my husband and me, his recommendation made perfect sense.
During their three month checkup, our pediatrician gave us a referral to take the boys in for a consultation and agreed with my husband that their head shapes were not improving on their own. Prior to our referral for a consultation, our pediatrician had shown us different methods that would help reform their heads naturally. For our boys, both cases were labeled as “severe” and the only corrective action was through the use of a helmet. Our pediatrician had to give us a referral to get our insurance to cover the cost of the consultation and the helmets. Hearing this became very confusing however. I asked myself and their doctor, “Why wouldn’t this be covered? We have great insurance and is this not considered a medical condition?” Slight panic began to set in for both my husband and me.
Our pediatrician informed us that most insurance companies don’t cover the helmets, or will only cover them after a consultation. I was in shock, these helmets can range from $2500 to $4000 and we have two babies that needed them! I thought my husband was going to pass out at the thought of our insurance company not covering the cost. We were possibly looking at $8000 for both boys. How would we afford them if our insurance company didn’t cover the cost or even fifty percent? My husband said no matter what we will make it work, and if we have to pay for them we will. If there was no other option we would max out a credit card or take out a personal loan. We would do what we had to do for our boys. What do parents do if they one don’t have insurance or two their insurance company won’t cover the cost? What options are there for financial help? None from what I was told.
The first consultation we had was for the Doc Band, the office and staff were great and very professional. We felt really comfortable with them and they really educated us on the condition of each child’s head shape. Kathan was diagnosed with the condition called Brachycephaly or “Flat head Syndrome.” Unbeknownst to us, Brachycephaly by definition falls under the category of Plagiocephaly but references a different form of head shape. Regardless of the diagnosis, it was confirmed that our boy’s cases were confirmed “severe.” Both boys would need two Doc Bands each. Through insurance, only 50% would cover the total cost of the “Doc Band.” Which was a significant help. Our insurance company did give us an option to use Fountain Valley Orthopedics and stated that this company contracted with ‘STAR” helmets and were another very good brand. Not only was it another option for us, the consultant at “Doc Band” was sure that our insurance would cover 100% of the total cost, (excluding the initial consultation of $200 and our copay.) Naturally, we jumped at the opportunity and scheduled an appointment.
After having met with the specialist for “Star” helmets, my husband and I decided that we would proceed with the process. Overall the initial consultation and sizing of the helmets was painless. I will however state that the “break in” period for the helmets was a little strenuous. A period of time passed and the helmets essentially became a second skin for the boys though. It came to be that they didn’t even notice they were wearing them for the 23 hour a day period. Time passed though and we noticed drastic improvements and results. The total duration for the treatment for our boys was about eight to nine months (every case is different and can be a longer duration.)
Having gone through this process, I can honestly say that I am glad we decided to go through with treatment for our boys. We are very pleased with the results of their head shapes. Looking back financially, the total cost including co-pay, was no more than $250 for both boys. A drastic difference as opposed to thousands. I know just as much as the next parent that finances can be one of the most difficult hurdles in both marriage, and parenting. Regardless, I am confident that no matter what the cost if we didn’t have insurance, we would have somehow made it work. But what about the parents that don’t have any other options? What do parents do if they don’t have insurance or their insurance company won’t cover the cost? What options are there for financial help? None, as of 2013, from what I was told. No grants, discounts, or organizations to help these children or parents.
Not many people know what Plagiocephaly is or why they see babies wearing helmets. Unless it directly effects you or a loved one, you really have no idea. I can see why at the time there were no programs or financial help, since Plagiocephaly is a fairly new diagnosis. That’s why I am so excited about The Halo Project! Parents now have somewhere to go for advise, help, and financial assistance. I so wish that The Halo Project was available to my husband and me. Google only gets your so far when your a freaked out parent. Even if we just had The Halo Project website to go to for information or a place to meet and talk with other parents that have gone through what we were going through. Our family is excited to be apart of something so great!