Hannah's Noggin

Welcome!

Welcome to Hannah's Plagiocephaly page! This site was designed to chronicle our family's experience with Positional Plagiocephaly. Our daughter Hannah wore 3 DOCbands to correct her very severe plagiocephaly, and despite all the roadblocks along the way, we're very happy with our experience. Follow along our journey in getting her diagnosed, treated, fighting our insurance, and then being faced with possible regression and doing it all over again!

Did you know that since the start of the Back to Sleep Campaign in 1992, the incidence of Plagiocephaly has increased from 1 in 300 to 1 in 50? Please share Hannah's story with others and help me on my quest to raise awareness!

Feel free to email me if you'd like to know more and if you're a plagio parent, definitely join the Yahoo! Plagio Group!  It's an invaluable resource!

Most photos can be clicked on to be enlarged.

***NEW-- Scroll down towards the end of Hannah's story to read the plagio journey of Hannah's baby brother, Jack. He was also born with severe inutero plagiocephaly, and wore two DOCbands.***

December 2002- Welcome Hannah

After nine or so months of just *knowing* we were having a Baby Jack, Hannah Rose entered the world at 7lbs 8ozs, just one day after her due date. I was ecstatic like most moms--not to mention the immediate relief of not having her feet jammed under my right ribs any longer!

The doctor said Hannah looked great, had a couple stork bites that would fade in time, a crooked head that would fix itself within a couple weeks, and a couple folded ears that may or may not completely "pop" back up. We happily took our perfect baby home and I didn't think twice about those things.

Looking back now, I know that Hannah's plagio began inutero and I had signs of it way back when I was 16 weeks pregnant. That was my first ultrasound, where the tech was unable to get an accurate head circumference because Hannah was "much too low." The second try a month later, despite them having me empty my bladder and elevate my butt up on pillows, had the exact same outcome. Soon after that I began having preterm labor contractions and early dilation and was put on modified bed rest.

I'm just over five feet tall, and Hannah was really wedged funny, so inutero constraint is the obvious culprit to her odd shaped head. Here is a picture of her right after birth where you can see how she has kind of a lima bean shaped head, and also a picture taken at Christmas the following year after the completion of two of her three helmets where you can still see a slight overall slant:

February 2002- Starting To Get Worried

Starting around when Hannah was in her second month, I starting wondering a bit more about why her head, which I had been told would fix itself within a couple weeks, was only getting worse. She had been dutifully placed on her back to sleep, plus more than loved her vibrating bouncy seat to help soothe her colic. We happily carted her around in her all too convenient carseat/baby carrier everywhere she went, and she also spent some time in her swing.

Her ears did pop up on their own thankfully (aside from a small dent in the cartilage), which is kind of ironic since at the hospital we were told that might be a worry, but the head--that would be fine! Here is what one of the ear folds looked like:

Another thing I had noticed was that since birth, when Hannah was sucking on one of her beloved pacifiers, it actually covered up one of her nostrils.  Little did I know that this was because of the facial asymmetry related to her flattened head!

Around now was when it occurred to me that I should try and keep her off that flat side. I bought her a sleep positioner and tried to put her toys on her left side, but she wriggled out of the positioner and would prefer to look at a blank wall on her comfy flat right than fun toys on the left.

At her two month well baby visit I talked to our pediatrician about it. She was not worried at all and told us that once she got older it would round out, but if it didn't "at least she's a girl and she can grow her hair to cover it." She said if we really wanted when she was six months we could do some xrays to check for other abnormalities (craniosynostosis) and she could refer us to a specialist.

March 2002- Internet Bliss & Specialist Visit

The sleep positioner was a crock, I was a repositioning failure, Hannah's head was getting worse, and I was getting stressed. I saw in my One Step Ahead catalog the Head 'n Back sleep positioner that used memory foam and claimed to relieve the pressure that can lead to "plagio." This was the first time I had ever seen or heard that word.

I got right online and looked up "flat head" and "plagio" and immediately was flooded with images of heads that looked just like my daughter's, though many of them not as bad. It was this night that I found the Yahoo Positional Plagiocephaly Support Group, and the answers to all my questions. I spent the night reading through the extensive files and links sections and some posts from parents. The next day I took some pictures of Hannah's head and posted them for opinions.

The amazing parents on this site urged me not to wait until she was older, as early treatment is key, especially where Hannah appeared to be severe. I called my pediatrician the next day and demanded a referral to see a specialist. Our pediatrician also ordered xrays to rule out premature fusing of Hannah's sutures (Craniosynostosis, a more serious condition requiring surgery). Thankfully the xrays came back fine and we were on our way to see Dr. Joseph Madsen at Children's Hospital in Boston the following week.

Dr. Madsen diagnosed Hannah with the worst case of plagiocephaly he'd ever seen and wrote us a prescription for a molding helmet. He sent us downstairs to NOPCO, a brace shop located in the hospital, where we waited for a couple hours to talk to one of the orthotists. I learned they were in their first week of using a STARband modified to be passive, rather than their own custom band that they had used in the past. They told me Hannah was too young to be banded and wouldn't consider it until she was five months old. I also looked into Hanger in Massachusetts and Cranial Technologies in Clinton, Connecticut.

We were told by all three of these places that our insurance, BCBS of Massachusetts, would deny us coverage for the helmets. From knowledge gained on the Yahoo Plagio Group, I knew that the most important thing to look for was an experienced orthotist. I didn't trust my abilities to properly interview these orthotists, and therefore we decided to go with Cranial Tech, as all their orthotists are required to be specially trained in cranial remolding with their DOCband helmet.

I called Cranial Tech, faxed them our prescription and letter of medical necessity from Dr. Madsen, and they forwarded it all over to BCBS for the required precert.

April 2002- Insurance Woes & Casting

BCBS told us a precert was required, and that's what we were waiting on. A couple weeks later, they said they couldn't process the request because they had no referral on file from our pediatrician to the neurosurgeon. I got that squared away and CT refiled the claim and we waited a couple more weeks. After wasting almost two months of precious treatment time, BCBS of MA said they would not precert the claim and we'd have to proceed with treatment and assume the cost. If we were then denied, we could still appeal. We made our casting appointment and Hannah would soon be banded!

Our pediatrician was still not pro-banding, and offered us a second opinion for another neurosurgeon, but we knew we were doing the right thing for Hannah.

The casting wasn't fun, and Hannah screamed for the entire 10 or so minutes, but I was fully prepared for that and I think that made it easier.  I brought along a bottle (which she didn't much care for anyway because she was breastfed), her beloved pacifier, and even a lollipop, but nothing worked.  Of course, with her intense personality, she screamed like this every time we changed her diaper as well!  Some laid back babies aren't phased in the least and don't even cry.  Hannah screamed and wore herself out and actually fell asleep in the tub afterwards! 

May-July 2002- DOCband #1

Two weeks later we picked up Hannah's DOCband helmet. The first couple days were a little rough for Hannah because she was sweating alot and having trouble sleeping, but I think they were actually worse for me! Within a couple days she was back to normal though, and I had decorated her helmet and made it a little more attractive. I was amazed at how great the band fit right from the beginning. It was a little low at first, but after Lynne (our CT clinician) adjusted it a little it was perfect! Here she is at Cranial Tech before that adjustment and then the following day:
When we started venturing out of the house the fun really started. In addition to all the stares and looks of pity, we got everything from "Did your mother drop you on your head?" to "You must be really overprotective," to "Wow, I've never seen a seizure helmet like that before!" Some days the stares and comments really bothered me, but I tried to make the most of it by using it as an opportunity to educate others about plagio. What made it all worth it though was seeing the progress first hand, and it was noticeably better after only a couple weeks. Here is her 3 week progress picture (this is one you'll definitely want to click to enlarge!):

With her being so young (only 4.5 mos when she received her band) she only fit in that first band for about 10 weeks. Her asymmetry had improved from 20mm to 10mm during that time, and CT recommended a second band for Hannah. With the drastic and very encouraging improvement we were seeing, we decided we wanted to go for the second band. Anticipating her soon growing out of that first band, we had made an appointment at the neurosurgery clinic (we were supposed to see Dr. Proctor, but ended up with Dr. Smith), and he said that he'd like to see Hannah banded for another month and then she should be within the normal measurement range, but if we'd like to go for the second band we could call for the prescription. We learned the following week that she had grown out of the band though, so we called to ask for the prescription for the second band. They said they'd fax it, but while we were on the way to the casting appointment Dr. Madsen called and said he didn't feel the second band was necessary, despite her still having 10mm of asymmetry! We turned around and felt this may be a sign to forget about the second band. I ended up calling our pediatrician though, and she surprisingly wrote the prescription for us. The next week on the way to the casting we were caught in the traffic of the highway being closed because of a bad car accident and again had to turn around and go home! We were getting very discouraged and then had an additional delay with BCBS again!

  BCBS kept "losing" our claim and kept requesting it to be re-faxed, etc. We knew we had to get an answer on the first band before they'd give us an answer on the second one, so I began to make some calls. I contacted our local newspaper after learning of a press release that the American Academy of Pediatrics would be releasing on the link between the Back to Sleep Campaign and the increase in cases of Plagio. They agreed to run a story on Hannah in conjunction with an article on the press release. To our surprise Hannah's Story ran on the front page! One of our local Boston news stations had also seen the article and offered to make some calls for us. In addition, my husband's employer (who our insurance was through) saw the article and made some calls. We found out within 24 hours that the band would be covered, and the funny part is that we received our official denial in the mail only a day later! Goes to show you what a little media attention can do! It was covered 100% because of the media, but would have been denied completely! With the second band we were again denied, but they ended up covering it as a continuation of treatment (and that just took one phone call, no appeal necessary!).

August-November 2002- DOCband #2

Hannah was finally casted and received her second band after having outgrown the first one three weeks earlier. She readjusted perfectly to being helmeted again. We had a couple fit issues with this band, but Cranial Tech was great about always fitting us in and taking care of it. It's never fun to make an extra trip when you're traveling 3 hours each way, but they make it easier with how accommodating they are at least. We learned to hang around a bit after an adjustment and go to lunch or something and then do a skin check before returning home.

She learned to walk in this second helmet, and was saved from many bumps and bruises! We entered her in the DOCband calendar contest too and learned that she made it in! Hannah's head continued to progress and she became an official DOCgrad just before Thanksgiving, 14 weeks after being fitted. She wasn't at 100% correction, but CT did not think she would benefit from a third band and her progress was simply amazing!

February-March 2003- Regression Fears & Visiting CT Corporate

A few months after graduation, when Hannah was about 14 months old, I started thinking her head was looking a bit worse. I know many parents of graduates go through this, so I figured that was all it was. I started thinking I was going crazy imagining things, so I took some pictures of her head and compared them to her exit photos from band #2. I still didn't think her head looked as good as it did at graduation so I contacted Cranial Tech.

Because we had opted out of the exit cast after band #2, (as I figured with her being a year old and not having tort or anything, the risk of her regressing was next to nothing) we had no record of her exact headshape at graduation. We were about to fly out to Arizona to Cranial Tech's corporate headquarters anyway for a conference that I'd be attending with the other moderators of the Yahoo! Plagio Group, so Cranial Tech offered us some options. While in Arizona we had her pictures done again to try and compare the shape. They tried to recreate the exact angles done at her graduation four months earlier in order to compare. Here are the two sets of pictures next to each other. We also had the opportunity to digitize her in Cranial Tech's new digitizer, which is still in clinical trials. Here are some pictures of her "digitized" head:

Seeing her head in 3D was very helpful in determining what was asymmetry and what *appeared* to be asymmetry, considering Hannah has a head tilt. They were also concerned with the head tilt, considering tort had been ruled out many times. They thought Hannah would benefit from being banded again, and after having her eyes tested (because of the tilt) and speaking to our pediatrician again, we decided to go for it. Our previously anti-banding ped really surprised me when I asked her opinion on the third band and she said, "you've been this far, why stop just short of the finish line?" Our pediatrician wrote the third prescription and Hannah was casted for her band back in Connecticut. She received her third band on March 30th, at 15.5mos of age.

April-July 2004- DOCband #3 & An "Older" Baby

At almost 16 months old, and with a very intense personality, I knew that banding Hannah again would be the ultimate test for how tolerable these bands really are. Hannah was able to whip that band off with one hand in a jiffy if she felt like it. However, she only did a couple times in all 16 weeks of being banded! There were so many times in her younger banded days that I'd wonder if the band bothered her if she was fussy or if it was uncomfortable and she just couldn't tell us. I learned instead that they are truly like second skin. The only times Hannah ever took her band off was a couple times at night when she woke up really sweaty and a couple times in her carseat when she was really sweaty. Other than that she actually LIKED it and would try and put it back on if she found it drying during her hour off!

At her age, I realized that banding her was a bit of a gamble as far as how much correction we'd see, but I really thought she'd want me to get her as much correction as possible. I didn't want to regret not going for that third band someday, and I'm so glad that we continued with her treatment. She wore the band for the maximum allowed 16 weeks, and in that time saw some great results, as you can see here in the DOCband #3 photos.

Hannah became an official DOCgrad on July 30th after being banded on and off for over a year.  Her treatment time minus all the gaps was about 40 weeks.

Looking Back

Believe it or not, those 40 weeks are a very distant memory.  It has only been a couple months since graduation, but it really feels like it was a very small part of our lives.  I certainly don't miss all those long drives (if you have to travel, buy a portable DVD player--the thing is worth it's weight in gold!) or scrubbing the helmet every day, but other than that they are all good memories.  The people at Cranial Tech were wonderful, and it was kind of sad leaving there for the last time after spending so much time there and knowing all they did for Hannah. 

After 3 bands and all those months of treatment I learned quite a bit! If you're on the fence about banding, go for it! It can only make things better and it really doesn't bother the baby. It just doesn't make sense to risk regretting your decision for your whole life, so I really feel like if you're even asking yourself the question of if you should band or not and the band is offered to you by an experienced orthotist, than you have nothing to lose. I'm glad we did all three of Hannah's bands and if I could go back and do it all over again I'd make the same decisions.

If you do go the helmet route, there are things you can do to make it easier. Put your baby's name on the helmet because it acts as a great ice breaker for people to ask about (rather than just stare at) the helmet. Some days you won't feel like it or won't have time to talk to everyone you see though, so make an info sheet like Hannah's and keep it in your diaper bag. These things were lifesavers because you really wouldn't believe the number of people who will want to ask you a million questions! It's the only opportunity you'll probably have to educate others about plagio, so take advantage of it--once the helmet is off, nobody will know to ask!

Also, do the exit cast! Regression is very rare, but worrying about it is not. Being able to look at that exit cast can give you great piece of mind if you go through that regression panic stage.  Hannah had 4 castings and is no worse off.  She didn't enjoy them, nor did we, but I'm sure she doesn't remember them.  Actually, as she got older, the picture sessions at Cranial Tech became worse than the castings!  If you look at her Band #3 Progress Photos you'll see what I mean!

Beginning the process is very overwhelming and scary.  It does get easier though.  It is especially intimidating if you're having to fight your doctor to gain support.  Being a young mom, I was worried what people would think of Hannah wearing a helmet, and while I did get some of *those* comments, it was mostly all positive.  When I did encounter a rude person, I always reminded myself that this would be the same type of person who would have made fun of Hannah in the future for her crooked head if I hadn't banded her.  I'd much rather have them staring at her as a baby (when she smiles and chalks it up as cuteness points) then have her be in school and having her classmates pick on her.  I often explained her helmet as being similar to braces for teeth and most people can relate to that.

If you have any questions/comments/etc. please either leave a comment or email me.  Let me know if there is anything else about our journey that you'd like me to include. 

August 2005- One Year After Graduation

It's hard to believe it has been a year since Hannah has worn a helmet, but it's even harder to believe that she is already two and a half years old!  She is doing wonderful, smart as a whip and keeping us entertained all the time.  Her head looks pretty good these days.  I posted a new set of photos, but it was hard to get good ones with all the hair she has.  You can see the remaining bit of flatness she has and that her ears are not perfectly aligned.  I used to really be fixated on this and I was really disappointed that she wouldn't get "complete" correction, but I can honestly say I'm at peace with it now.  I know I did all I could, three helmets, banding her at a young age, researching my options, etc, and I know she got amazing correction.  I never understood the inutero complications of plagio either, which I now know can play a big part in correcting plagio.  Her progress was just so incredible that I still can't believe it when I look at her progress pictures.  Of course I still feel like our journey was well worth it and I only have good memories of the process (aside from the travel and insurance battles).  Good luck to everyone!

October 2006- Big Sister Hannah!

Hannah is almost 4 years old now and doing great.  She is way ahead of where she should be for her age in most everything and is just incredibly smart.  We can certainly say having plagio as a baby didn't cause her any long term issues!  Her head hasn't changed at all since the last update I posted and I'm sure it never will, but because she has thick and curly hair you don't notice the flatness unless it's wet.  The only issues we've encountered are finding a properly fitting bicycle helmet and sunglasses for her.

In January, Hannah will be a big sister!  She is very excited about the pending arrival of her little brother.  We've had some issues with this pregnancy and have therefore already had seven ultrasounds, where we've definitely confirmed that it is indeed a boy and that he is indeed head down and very low.  This is exactly what we were told about Hannah during her ultrasounds and what we figured caused her misshapen head.  We're hoping for a round little newborn head this time, but I'm honestly not concerned in the least.  I will just be greatful for a healthy baby, flat head or not.  We know and will faithfully use all the repositioning strategies, and if needed we'll get him a helmet.  We've been there and done that and it's nice to know it's no big deal.  While it would be nice not to have to use Cranial Technologies' services this time, it's very comforting to know they're there if we need them!

Update 1/1/07:  I've had lots of emails asking if the baby has arrived yet and if I'll post about it when he does.  No baby yet, and yes I will definitely post the news of his arrival.  Thanks as usual for all the email comments and well wishes from everyone!

January 2007- Welcome Baby Jack!

Little Jack has arrived!  He was born on his due date, January 20th, and weighed 8lbs 1oz and was 21 inches long!  I'm only five feet tall, so having a baby that big was a definite surprise and had I known he was that big I surely would have chickened out of the natural childbirth, lol!  My labor was great though considering I had to be induced, just 4.5 hours start to finish, and only 4 minutes of pushing.  Jack is perfectly healthy and such a sweet baby.  We are all totally in love and Hannah is absolutely obsessed with him. 

Like the ultrasounds may have hinted, Jack was indeed born with a head shape similar to Hannah's.  The pediatrician said I must have a nice cozy pocket in my uterus that they like to settle into and not move.  It has improved quite a bit since birth and we're hoping that will continute.  He has a definite preference to his right side, but also like Hannah his neck doesn't seem tight at all.  We've been repositioning him as much as we can and we've been making use of various sleep positioners we have.  Jack also had a majorly smooshed ear like Hannah, but his was completely flat, where hers was folded down.  At his first pediatrician evaluation (yes, we still have the same one) she said she wasn't sure if the cartilidge even formed correctly, but thankfully it did and it has popped out since.

This first picture of him sleeping was taken at 2 days old and I think you can see the slant of his head pretty well.  The awake and birds eye pictures were just taken at three weeks old.  You can certainly see the improvement from the front!  I'm going to try again to get a birds eye one that shows the areas of concern better just so I have a good before picture to compare our repositioning progress to.  He was being a major wiggle worm when I was trying to get that one!  I find it so weird that he has the exact dent over his left ear that Hannah did.  They really must have been in very similar positions.

   

 

March 2007 - Jack's Referral & Specialist Visit

Though some aspects of Jack's head did improve in his first six weeks, other areas did not.  To complicate things further, he was diagnosed with reflux and had to stay on a 30 degree incline for most of the day and night.  This is not good, as the pressures from inclined surfaces can cause an increase in head height because it encourages the head to grow upward.  Plus, he already had such a strong preference to look right.  Jack's head wasn't improving despite our best efforts. 

At his one month appointment I had mentioned his head to our pediatrician, who just said we'd keep an eye on it as he grew.  I was also completely unsure of how to best position him to help that dent over his left ear, so I contacted Cranial Technologies for their input.  I was told that since he had such a strong preference for looking right, I should give him lots of supervised tummy time with his head facing left so he didn't lose his range of motion.  We continued this, plus I held him off his flat side for as much of the day as I could.

Unfortunately by two months, his head was still a definite concern.  Our pediatrician inspected him from all angles and said we needed to be referred to a specialist.  We made an appointment with Dr. Gary Rogers at Boston's Children's Hospital.  He saw us the following week and diagnosed Jack with severe plagiocepaly and torticollis.  Much to my surprise, Jack actually measured more severe than Hannah did (21mm vs. 20mm)!  I will say that he doesn't have the width issues that she did though.  Neither were measured for brachycephaly though, but Jack's head certainly doesn't appear to have the width to me.

Given his severity and inutero components of his head shape, it was suggested we start treatment right away.  Dr. Rogers referred us to NOPCO, but we asked him for a non-brand specific prescription, and have again opted to use Cranial Technologies in Connecticut.  We are currently waiting for the precert from Tufts and then will have him casted.  Here are some pictures of his head shape and the "dent" over his left ear.

 

May 2007 - Jack is Banded

Tufts finally approved our claim and Jack was casted at three months old.  I was really surprised how much you could see his tilt in the before pictures that Cranial Tech took of him.  A week later we picked up Jack's band and began his road to a rounder head!

The first week was a bit rocky with some red spot issues.  He seems to have more sensitive skin than Hannah did.  After and adjustment and some hydrocortisone cream things seem to be much better.

July 2007- Amazing Progress!

Jack grew at an incredible rate in his band, so fast that he outgrew it in only six weeks.  This is actually a good thing, as that growth all happened right where we needed it.  In that six weeks Jack's asymmetry improved from 21mm to just 7mm!  That is over 2mm of correction a week!!!  Simply incredible!  Because the band was outgrown so quickly, and we had a couple weeks wait to get in with Dr. Rogers, Jack was out of a band for a couple weeks.  Dr. Rogers said he'd like to see him banded for another few weeks and Cranial Tech did recommend another band, so we decided to go for it.  Jack was casted again and will receive his second band on August 1st. 

Click on the picture below to see the progress--top row is before, bottom row is after five weeks of treatment.  We were especially pleased with how much the "dent" above his ear improved as well.

October 2007 - Jack Graduates!

Jack continued to grow quickly, and therefore had tremendous improvement in his second band as well.  We are just thrilled with his results and I will definitely post his B&A pics.  He looks great!

I also didn't mention before that Jack was also diagnosed with torticollis.  He started physical therapy while in the first band, and soon after qualified for Early Intervention.  He did have some gross motor delays from the torticollis, but he is really catching up now!