It appears that Adele was born with Positional Plagiocephaly due to in-utero constraint, and that her head shape worsened over time by back sleeping on firm surfaces.

Adele spent the entire pregnancy in the same head down position, and she engaged into the pelvis more then 4 weeks before birth.  In addition, since I had gestational diabetes which was not diagnosed until 32 weeks, so she was likely born slightly larger then she would have been otherwise. Both of these factors contributed to a tight uterine environment. 

At one week old we noticed that Adele's left eye was considerably more open then the right.  She would also always sleep facing left (as indicated by early photos).  Then at six weeks we noticed she had a bulge on the right side of her head. It wasn't until a few days later when an acquaintance noted "she still has her birth head" that we realized the left side of her head was flattened. 

The Long Road to Treatment

At her 2 month appointment when we mentioned the flattening to the pediatrician, he said just promote belly time and that they would re-evaluate her situation at 4 months. He also mentioned that some babies needed to see a neurosurgeon and be helmeted. The mention of 'neurosurgeon' scared me, so on my own I began to try to reposition her. We were not successful at having her sleep on her side, but would turn her head off the flat side whenever we put her to sleep. However, most of the time she would turn back the next time she stirred. Particularly because by this time her head was flattened enough that it would naturally roll to the flat side.  At 2-1/2 months she started sucking her left thumb to put herself to sleep, so repositioning became even more difficult.

At her 4 month appointment we had a different pediatrician who said not to worry, it would round out. The doctor also asked if it had gotten better.  I thought not, but went home and reviewed some early videos to check it out. Till convinced there was no improvement, I called the pediatrician back and she ordered head x-rays.  Since the x-rays showed no premature closure of sutures, the pediatrician said don't worry, it will round out. Still, I was concerned enough to insist on and get a referral for a pediatric neurosurgeon. 

After delays and rescheduling, we finally saw a pediatric neurosurgeon when Adele was 6 months old. He said her plagio was moderate, she had very mild facial asymmetry, and that it was just a cosmetic condition. He said that research could not show that banding was better then repositioning, so he thought bands were a not worth the expense except for the most severe cases. He did not prescribe a band, just suggested I have her sleep on her belly. That was impossible, since anytime she was placed on her belly, she would roll to her back. 

Note:  I later learned that the research that this doctor based his recommendation on (Moss, 1997, Neurosurgical Focus ) was statistically inconclusive, and so should not have been used to as the basis for treatment recommendations.

We had a follow-up appointment with a second pediatric neurosurgeon when Adele was 7 months old. This doctor has a 5 point system for determining severity. He gives a point each for: flattening, ear placement, upper face asymmetry, lower face asymmetry, and overall displacement. He thought Adele was a 2 (flattened back & slight forehead bulge) essentially mild-moderate plagio. He said with more severe cases of plagio it was clear that banding was medically necessary, but not necessarily in milder cases like Adele's. He said he sees plenty of children like her, who by 2 years of age no longer have a noticeable condition. Although he did say he didn't think she needed it, he said he would prescribe a DOC Band if I wanted it. He also mentioned that he thought it was not worth the out-of-pocket expenses if insurance didn't pay for it. 

Note:  Adele's ears actually were significantly misplaced, but it was not obvious from above because they are small and do not stick out beyond her head. A better way to view ear asymmetry is from the chin up.  Had this been noted, Adele would have been a 3 or moderate on this doctor's scale.

At 7-1/2 months we made the decision to go ahead and band. This decision was based on: 1) she continued to sleep on her back -- unlike many babies at this age -- so that the deforming pressures remained 2) after seeing a baby of the same age, size, and hair color/texture with a normal head shape it was obvious how far from normal her head really is, and how far she had to go for it to 'round out on it's own' 3) our insurance pre-authorized at 80% without appeals. 

Note: It took 5 weeks between decision to band and start of treatment.

DOC Band Treatment

Adele started DOC (Dynamic Orthotic Cranioplasty) Band treatment at 8.75 mo.  We got a slow start, as she picked up an intestinal flu the first week and refused solids for several days.  For about a month after that time, we saw good growth and the start of correction.  But Adele's growth slowed at about 10 months of age.  As a result, she was in the DOC Band almost 4 months (original estimate was 2.5-3.5 months) and only got about 50% correction.  Most of that correction was in the upper part of her head, so her ears and eyes still retained some asymmetry. 

Note: Adele's back of head measurement (CVA) was 11 mm pre-treatment, 7 mm post-treatment.  Her lower face and ears (SBA) measurement was 6 mm pretreatment, 4 mm post.  Normal for these measurements is 0-2mm.

DOC Band treatment ceased long before Adele out-grew the width of the foam liner.  The bulge on the right side of her head was improved enough that the holding points on the band were no longer effective.  The folks at Cranial Technologies said that even though Adele grew slowly, they would have expected her to be in the band longer (i.e. and have more correction). I believe this was because a poor adjustment early on resulted in a sharp ridge inside the foam where a shaved out area met an unshaved area. Halfway through treatment it caused a skin breakthrough; the subsequent correction released her pressure points sooner then expected.

Adele's continued eye asymmetry was apparent immediately following completion of band treatment.  It was not until 5 weeks after completion that the extent of her ear asymmetry became apparent from the exit cast and the measurements taken at that time.  At a visit to yet a third specialist (this one a craniofacial plastic surgeon) a 2nd band was recommended, with the caveat that the amount of correction could not be estimated because of her age and slow growth rate. 

After a 3 week delay for insurance pre-approval and another 3 week wait to get a casting appointment, Adele finally began treatment with a second DOC band at 16 months of age.  This time the wait between second band recommendation and treatment was 9 (!) weeks.  In the meantime, Adele had a large growth spurt. We now think she would be lucky to get about half the volume correction that she got with the first band -- still putting her outside the range of normal asymmetry. 

In Retrospect

What we did right ... 

We never used a car seat carrier, but instead used a soft sling to carry Adele outside of the car.  We spent a lot of time stressing tummy time from 3 months on.  (By 4 months old she was comfortable enough to take supervised naps that way, but once she learned to roll over at 5 months, she would always turn onto her back).  We didn't use a swing until she was 5 months old and already sitting up, so pressure to the back of the head was minimized during the awake hours.

What we should have done ... 

First, I should have had better nighttime repositioning techniques -- either by forcing Adele to sleep on her right side until she became comfortable with it or by putting a small roll under left shoulder to keep her head off that side. 

Second, I should have chosen a 'plagio friendly' specialist recommended on www.plagiocephaly.org or www.cappskids.org.  I didn't because I thought they might be biased toward banding.  In retrospect, I could have always refused treatment if I thought a doctor's recommendation was inappropriate. 

Third, I should have taken the opportunity to band (both times) as soon as it was offered.  Just a few weeks waiting for insurance pre-authorization or additional 'rounding out' can mean less overall correction if in the meantime the baby's growth slows down.  If we had started treatment immediately upon seeing the second specialist, it is likely that Adele would not have needed a second band. 

My Recommendations

Prevention:

The best way to prevent post-birth causes of positional Plagiocephaly and bracheocephaly is to: 1) alternate the direction your baby faces each time you place him/her down, 2) avoid the use of hard carriers, swings, bassinet mattresses, etc., 3) hold your newborn (on shoulder or in sling) as much as possible during the day, 4) start supervised tummy time as soon and as often as possible.

If you notice flattening of your child's head:

1) Follow all the prevention techniques.   2)  Have a specialist see your baby to rule out craniosynostosis.  3) Position the baby's head away from the preferred side when back sleeping by elevating shoulder on the flattened side.  One of the easiest ways to do this is to sew a small sock on the back of a onesie behind the shoulder of the flat side and stuff with foam or polyfill.  Adjust amount of fill as needed.  If your baby still turns towards the flat side, then they may have torticollis (neck tightening or head tilt) that will require physical therapy to correct.    See www.cappskids.org/repositioning or www.plagiocephaly.org/support/repo for other daytime and night-time repositioning ideas.
 
 

BEFORE and AFTER 1st DOC BAND TREATMENT (9-13mo)
		4 months - left side of head higher then right
		6 months - moderate plagiocephaly after 4 months of repositioning
		14.5 months - significant correction to crown of head after 1st DOC Band
		14.5 months - residual flattness at left skull base after DOC Band
		7.5 months - profile shows sloped forehead and flattening to back
		14.5 months - side profile shows some rounding of back after DOC treatment
		14.5 months - left ear still displaced forward
		5 weeks - eye asymmetry was first noticed at 1 week old
		6 months - eye asymmetry when smiles
		14 months - eye asymmetry continues after Band treatment
DECORATED DOC BANDS
	9.5 months - 3 weeks into first DOC Band
	17 months - 1 month into second DOC Band

If you've found this page helpful as you journey through your child's plagio, please let me know at wweiher@hotmail.com.