Claire is 9 Months Old!

Claire turned 9 months old on Wednesday! This jar is more of a bongo to her than a dog treat jar. The dogs sure come running when she plays it though! Gone is the completely innocent baby and in her place is a sassy little thing with a mind of her own! She knows the word “no” (very common in our house now) and when you say it to her she will either laugh or throw a fit, depending on her mood.

I don't really have an update at this point other than just what's been going through our heads. As though I could coherently lay that out for you. We've been really struggling under the weight of this impossible decision. We still don't have all of the opinions we would like to get and only time will tell how those will figure into what we've been thinking so far. But we have had a really difficult couple of weeks.

Shortly after meeting with the latest surgeon, Dr. Phoenix, I would say we were leaning toward having the surgery. But I tried to do what I do, which is research. I sought out as many medical journal articles as I could that dealt with developmental delays and/or surgical treatment for metopic craniosynostosis. I started to try to read through them with the idea that I would be able to layout the overall "take-home" messages from each. But what I found really left us more confused than ever.

Generally the articles deal with examining patient records. These articles go back and revisit patients who had metopic craniosynostosis (and sometimes other types as well) and try to find out how many have experienced developmental delays or behavioral issues as reported by their parents or medical records, if available.

The general consensus is that children with metopic craniosynostosis have a higher prevalence of delays and behavior disorders than the general population. Different studies report it anywhere from 30% to 60% of the patients, which is 3 to 5 times higher than the general population. The issues are often speech delays (specifically language acquisition) but can also be behavioral issues (for example, ADD).

The least helpful part of these articles is that there is definitely no agreement among researchers as to whether surgery is helpful. Some report that these issues are less prevalent among children who have had surgery, some say they are more prevalent, and some say there is no difference. All say that "further studies are needed". There are so many unknowns. It is known that after a surgery the brain will take on a new, more normal shape within a couple of days. But is that too late, does it make a difference, or did the problems really start earlier? Was there just something that went wrong during development that caused the problems with both the brain and skull independently? Nobody knows for sure. So trying to learn more hasn't really been helpful.

There are other factors to think about, too. Such as the fact that we’re both terrified to have any type of surgery done that is unnecessary, for fear that the unthinkable could happen however unlikely that may be. Also not to be taken lightly is the cosmetic factor. We all know that people can be cruel and we are dealing with Claire’s face. Her pediatrician even found it amusing to compare her to a Klingon. I wasn’t laughing and I don’t think Claire will be one day either. It may be that it will be less noticeable or not a big deal later on but it is something that comes up when we discuss all of the factors.

So we have gone back and forth a million times. I probably change my mind about once every hour. We have an appointment with a neurosurgeon on the 18^th. The second plastic surgeon (Dr. Phoenix) asked us to see her before we make a decision. And we also have the appointment in Dallas later that week. By the end of the month we will probably have all the opinions we can deal with and we will have to see where we are at that point.

Thank you all for your thoughts and prayers and continued support. We know a lot of people are visiting the blog but aren’t sure who you all are. We would love to have you comment and leave us a note! If you don’t have the proper account you can choose the “anonymous” option in the comment section and leave your name in the message. We would love to hear from you! Also, I am always open to any questions you may have.