Q&A and Pictures

First, thank you all so much for your emails, blog comments, and facebook comments. It is so nice to know that there are so many people keeping Claire in their thoughts and prayers. This is one of those times that highlights how it is difficult for us to be so far away from "home".

There were a few questions and comments about craniosynostosis that came up a few times. One questions was "How common is this?". The most common cranio type involves the suture running down the middle of the back of the head, leading to an elongated and tall head shape. It occurs in about 1 out of 2,000 births. Another type involves the suture running down one side or the other. It affects about 1 out of every 2,500 births to 1 out of 3,500. I would say it is the most visually striking because the head will expand on the opposite side of the closed suture giving a very asymmetrical shape looking at the face. The metopic type that Claire has also affects 1 out of 2,500 to 3,500 births. A really rare type, thought to be about 1 in 50,000 births or less, affects the sutures low on the back of the skull.

Another question is whether we can connect with anyone else who has gone through this. A couple of our friends have mentioned that they know someone whose child has gone through this. I also found an online forum called Cranio Kids. It has been great for me! Parents from all over the world, as well as adults who have had the condition, get together on a message board to exchange stories, information, doctor and hospital recommendations, and of course support. It has been a great place for me to learn and "meet" people who know exactly what we are going through.

Before meeting with the surgeon we thought we would be in the clear because we read this on the website of a major craniofacial center:

"Many children may just have a ridge running down the center of their forehead suggesting that the metopic suture has closed early, however, without producing the triangular-shaped forehead.  Only those children who have overt trigonocephaly need treatment.  Children with an isolated ridge running down their foreheads do not require surgery."

We thought for sure that Claire would fall into that category, because to us her head looks mostly normal. I guess that is why we are not specialists and who knows exactly what "overt" means in this case anyway. But the same website also says this:

"Sometimes it can be very difficult to determine if a child has significant trigonocephaly, or not."

So, we will have to wait and see. That has been so hard. I hope to hear from the imaging center by the end of this week so we can get the appointment scheduled. There was a delay in getting a report from her doctor and if the insurance company requests the report it will set us back quite a while.

We have also been asked where the surgery will take place. This is an ongoing source of discussion and will require a post all its own. If we need surgery this will be a very big decision and will also depend on the other opinion(s) we get.

Finally, I'll post some pics of a typical, severe case of metopic and some pics we took of Claire's head in comparison.

Here is a typical picture of trigonocephaly that I stole from the internet:

Here is a picture of Claire from overhead:

At first I thought this picture showed a perfectly round head but the more I look at it I think I see the triangular shape. Obviously not as clear cut as the pictures above.

Here is a close-up of the ridge that has always been present, although I feel that it has become much more prominent, possibly a bad sign:

The ridge is surrounded by her stork-bite birthmark. I wonder if having the ridge contributed to those birthmarks (which are very common though). Also, can I just point out those beautiful blue eyes? At eight months old it seems that they might be here to stay. With Kyle and I both having brown hair and eyes I can say that I never pictured our baby this way! But I always wanted a blue-eyed baby!

Anyway, I could speculate about her head shape all day. And believe me, I do. The bottom line is that we won't know more until we have the CT and get another appointment with her surgeon. I just see this dragging on forever and it stinks.