The Helmet

Well the helmet has arrived. Technically it is called a D.O.C. band. D.O.C. sounds pretty gangsta' right? Unfortunately, the look...not so gangsta'.

Our little guy has had the helmet for 1 and 1/2 weeks. He is doing absolutely fabulous with the adjustment. When the Dr. came in to put the hat on him for the first time I was prepared for DRAMA. I thought screaming and pulling would be inevitable. Elias didn't even seem to notice. In fact the only time he fussed is when we took him away from all the awesome toys.

Elias has been doing great. We were prepared for the typical symptoms that accompany the first few days (i.e. excessive sweating, heat rash, skin irritaiton) but really nothing has been bad at all. We dress him cooler as we were told by the Dr. the helmet is like wearing a winter hat (summer in San Diego should be interesting). We have noticed some skin irritiation on his forehead but not so severe that we have had to remove the hat.

Now for the FAQs: (Warning - I am going to answer honestly. Some may think I am AGCI bashing. Not the case. These are facts. I am also aware that one cannot fix what one is not aware of.)

1) What's wrong with him? Nothing. He's perfect. :)

2) Ok, ok...so why the helmet? Elias has a misshapen head. Severely misshapen to be exact. At first glance you definitely wouldn't notice. Actually, I should rephrase. Most people don't notice although some have pointed it out immediately. As if I don't know.

3) What exactly do you mean by misshapen? Elias has a gigantic flat spot. It is approximately the back quarter of the right side of his head. This flat spot has caused his head to grow diagonally. Yes, my son's brain is shaped diagonally. No, this in no way affects the brain. At all. The diagonal growth has caused misalignment of Elias' facial features. When you see Elias all you think is "oh so CUTE!" This is true. Upon closer examination you will notice many abnormalities. 1/2 of his forehead protrudes farther than the other (because when something is diagonal and you look at it straight on, it has 2 high points and 2 low points). One cheek is larger than the other. One eye is smaller, lower, and squintier than the other. And the most noticeable of them all...one ear is lower and set father back on his head than the other. All of these facial misalignments are do to the severity of the flat spot.

4) What will the helmet do? Contrary to popular belief, the helmet does not "squish his brain" or "push" the high spots back into place. The way the helmet works is it is perfectly molded to the high points of his head (the helmet bumps right up against the skin). It in no way puts any pressure. Then the low points (the gigantic flat spot and the half of his forehead that is set farther back) have gaps in between the head and the helmet. This means the helmet holds the high points in place, forcing all future growth to be in the gaps (the flat spot and lower part of the forehead). So, the "high points" will always be the same...however when treatment is done the flat spot will have filled in and the "low point" of the forehead will have filled in. In essence his head will be round again. The facial misalignments are harder to correct but we should definitely see some improvement. At this point the goal with the facial misalignments is to prevent them from getting any worse.

5) Why bother with the helmet? Everybody and their brother likes to tell me about how so and so had a flat spot and it just corrected itself or hair just grew over and you can't tell. Like I said, Elias' case is severe. Let me put "severe" into perspective. Insurance will not even consider covering a helmet unless your child is rated severe or numerically a 12. Elias was rated a 29 (off the charts severe). His flat spot is so large it will not correct itself. True his hair would cover it and it would be minimally noticeable. However, all future growth would continue to be at a diagonal and the faicial asymmetry would continue to get more noticeable.

6) Are the only reasons cosmetic? Nope. Due to the misalignment of the ears Elias will be more prone to ear infections. Any correction we can get will lower this risk. In addition the ears show how the jaw will be aligned and right now we can anticipate a badly misaligned jaw and big orthodontic bills to fix it. Again, any correction we can get from the helmet will help.

7) How long does he have to wear the helmet? 23 hours per day (we take it off for a bath and to wash the helmet, let dry, and put it right back on). The length of treatment depends on the rate of growth. Average time is 3-4 months.

8) How did this happen? Two words. BOUNCY SEAT. There is a slight curvature to some of Elias' features which shows there was probably a small amount of trauma in the birth canal. However, this only slightly affected the facial features. The entire flat spot, diagonal growth, and misalignment of the facial features is due to a bouncy seat. Babies skulls are soft. You must rotate their heads. You must put them in different positions. The vast majority of babies at HH spend their time in bouncy seats. They sun bath in these, they eat in these, they hang out in these, some even nap in these.

For children who are at HH from Day 1 (like Elias) there will be reprucussions to living in an orphanage. We are blessed that our son was not malnourished (in fact the Dr. put him on a diet once he was home). We are blessed our son has no major physical, mental or emotional issues. Truly blessed. The fact is, he lived the first 6 and 1/2 months of his life at an orphanage and no matter how great of a job they do it is not the same as a family. He just was not held enough or given enough one-on-one attention to notice this problem.

HH does the best they can. I believe that. We would see special mothers with two babies in their arms and 3-4 bouncy seats sitting around them. They would have their arms occupied with 2 babies and be using their feet to go down the row and rock the babies in the bouncy seats.

In addition we have to do physical therapy with Elias to stretch his neck. Again, since he was often in a bouncy seat lying on the right side of his head (forming a flat spot) his neck was always slightly facing to the right. As displayed in this lovely referral photo

This means his muscles didn't develop evenly and when we got him he couldn't hardly turn to the left. When you would force his neck to the left you could see the strain in his eyes. This has gotten better with neck exercises, a.k.a. torture.

9) Did we know about this before hand? No and yes. No because no one from AGCI ever mentioned it. This was never in our paperwork. Even in country no one ever mentioned it. I got this photo from a trip Julie took and wondered why Elias' head looked cone like from an angle but didn't think twice about it. This was taken at 3 and 1/2 months old (after being at HH for 3 and 1/2 months).

Yes. A week before we traveled my sister, who lives in Addis Ababa, was allowed to go visit Elias. She noticed right away and called me to tell me he had a really large flat spot, it is really noticeable, bring some hats. Spoken like a true little sister :)

10) How can this be prevented? Simple. No excess of any one thing. If your child prefers sleeping on one side of his/her head in the crib, rotate it. Do not do anything in excess (bouncy seats, play pens, lying on the floor, etc) because the babies skull will start to be shaped the way it is when they are in that one position.

If you have a bouncy seat in your house, like this one...

use it as firewood. In fact, I am thinking of planning another trip to Ethiopia just to start a bonfire at HH.

TUMMY TIME IS GOOD! Now I can't speak on behalf of all babies at HH because I don't know. What I do know is Elias was NEVER placed on his tummy. Ever. This was obvious because when we got him we put him on his tummy at the Union. The babe was so scared. He had absolutely no neck strength. He was face down on the bed and couldn't even move his neck enough to turn his head to the side so he could breathe. This is truly unbelieveable because he was 6 and 1/2 months old. Within 2 weeks of being with us he could lift up his head when on his tummy. Within 1 month he could push himself up on his arms when on his tummy. He was just never given the opportunity for these muscles to develop.

We have been very blessed by a group of people who don't even know us (except from our blog, and a few kids know Brian from soccer). This awesome kids club from a church in the same town as ours made us a wonderful card and gave Elias their offering that they had been collecting for a pizza party. When they found out our insurance would not cover this expensive helmet they decided they wanted to give the money they had been collecting to Elias, whom they knew about because one of their leaders reads our blog (thank you, LuAnn). What a beautiful gesture showing the hearts of children following Jesus!

We are so blessed to live in San Diego (one of the few cities in the U.S. with a Cranial Technologies office). We are also so blessed to have people around us who are so supportive (like the kids at Bethel in Alpine).

FYI - Emily (my sister) ran into Almaz at church. She told Almaz that we were getting Elias a helmet and why. Almaz was very curious and wants to see pictures as well as be told why he needed it and how to prevent it. To all you adopting families please know that although no one at HH (including Almaz) seemed to notice that a flat spot was an issue to be concerned about she is willing to learn. She didn't get defensive but truly wants to know how she can best care for the children. This speaks volumes as to the type of director Almaz is and should give you all peace of mind. Above all, remember, despite the fab reputation of HH, it is still an orphanage doing the best they can and there will be things you will have to deal with (like coughs and runny noses, flat spots, over eaters, etc.)

Also, I will post more pictures of Elias in the helmet once we decorate it!