Saturday, July 24, 2010

Current Pictures

This series of pictures should show you a little more clearly what Addy's case of craniosynostosis looks like. The probable closure is the right coronal suture (going from the middle of the head down to the right ear).

Here she is! Ain't she a cutie?

Below is her "concerned" face. This look was even more exaggerated when she was first born. You'll noticed that the left side of the head (on your right in this picture) looks slightly larger than the other, the right eyebrow looks higher, and the left eye is slightly deviated from the other one. My pediatrician seems to think the eye deviation may be because there is pressure on her optic nerve, but a surgeon's assistant with whom I spoke seemed to think this was unlikely because of where the optic nerve is in the brain. I'm not sure who to believe on that matter.

Left side of the face -- looks normal and cute

Right side of the face

You may notice this side of her face looks fairly different than the other. You may also see the slight bump in the middle of her head, showing where (I believe) the front bone is slightly overlapping the back.

Here you can see that the left side of the forehead is definitely positioned further out than the right side.

Even more clearly here...

This is most obvious from the angle of looking down on her head, as in the picture below. Notice you can actually see her right eye from this angle, but you can't see the left eye. The forehead is retracted on the right side like this because the fused bone has not allowed it to expand forward as it should. (Compare this to the craniosynostosis photo in this post, and you will see why I said that picture looked like Addy.)

Back of the head -- note the left side is bigger than the right here too

She still is pretty darn cute for having a crooked head, though, isn't she? :-)

Being silly

We love you, little sweetie pie!


KC said...

A total cutie! Just like your other girls!

Darcy said...

Yes, she is adorable! I'll be praying for your sweet little girl!

Jayme said...

She is so precious. I'm glad you're starting to get some answers, and we're praying that she'll find just the right treatment.

Karen said...

May the Lord go before you and provide all you and Addy need. Blessings to your family.

patricia111112 said...

Hey, I just noticed your blog. I thought having a crooked head was something unpleasant but normal. Do you mean it's something that could be cured? I was born with an asymmetrical head as well and never got it treated. Not sure if my parents should have done something. I guess they assumed it was normal. Growing up my head changed a bit and the differences are less noticeable as an adult.

Jessica said...

@patricia111112, I think most people have some degree of craniofacial asymmetry (one of my eyes is higher than the other, for instance), so it may or may not be related to a condition like this. If it is pretty noticeable like my daughter's, though, it could be that you were born with the same condition. (Just for reference, my daughter's surgeon said he would classify her case as "moderate" in a range from mild to severe.)

Craniosynostosis is curable through surgery, but it is best done within the first couple years of life and ideally before 12 months before the skull begins to harden. I believe there are some adults who have gone through the surgery, but it would likely be an extremely difficult, painful, and expensive process and might require multiple surgeries, so I think those who have done it only did because they were suffering from things like brain pressure and frequent migraines. (This is the reason we went forward with the surgery with our little girl... If our concerns were cosmetic only, it would certainly be something to think about, but we likely would not have considered it to be worth the pain and risk to her.)

I have seen pictures of adults who had / likely had the exact condition as my daughter, but it was probably fairly mild, and I would never have noticed anything if it hadn't been pointed out. From what I've heard, the asymmetrical appearance does decrease as a child grows into an adult. So I do think it's something that some go through life having and never realizing it.

Anyway, that's about the extent of my knowledge of cranio in adults... and I'm not even sure about some of it. :-P For more info, there is an online forum where I found a lot of good info from other parents dealing with the same condition in their kids, and they have a section for adults. You may want to check it out! (Look for "Cranio Adults" under "All Craniosynostosis.")

Anonymous said...

I want to thank you so very much for this page!! There aren't any words to use to thank you from the bottom of my mama heart to yours, but thank you so very much! I just pursued a hunch that my daughter (4 months tomorrow) has this same diagnosis, based on Miss Addy's picture. Sure enough a CT scan was ordered and she does have craniosynostosis. I never would have even thought to search for this word, let alone suspect it. I was waiting on an ophthalmologist appt for my daughter, per the pediatrician, for over a month when this is what she has. It doesn't have anything to do with weak eye muscles like the pediatrician was pushing for. Thanks to you, I am now on the road to getting her the proper treatment she needs. Again, thank you so much!!!

Jessica said...

Wow, I’m so glad this was helpful in getting your daughter diagnosed! I hope and pray all goes smoothly with her treatment. If you are interested in getting information or support from other parents who are or have been in your shoes, I would recommend this Facebook group:
All the best to you and your sweet little girl!