Cranio thoughts

So I have been reading a lot of other peoples stories on how they came to the diagnosis of Craniosynostosis. It is truely heartbreaking to read some stories. In some cases, if craniosynostosis is not treated early enough it can lead to developmental delays and learning disabilities along with a bunch of other things. You would think that pediatricians would have a good understanding of this condition, especially since it really is a visual issue- I mean you can look at their heads and see that the shape is not quite right. Maybe there are many reasons for this- I'm no doctor, but you think you would rule out some things, or refer them to someone who would have more experience in this area. Many people have been the ones who did the research themselves and saw pictures of other children who looked like theirs and had to fight to get doctors to do the proper testing to confirm they were right. One google search lead me to find a picture of another baby that really looked just how Gabby looked. You would think doctors could do the same thing on some medical site or something.

We could have been lead down the wrong path pretty easily too. At her 2 week appointment our pediatrian thought that Gabby's face was asymetrical and that we would just keep an eye on things. At her 2 month appointment she thought that it was improving, which I think was Gabby just getting a little fatter and filling out a little more. She thought that she may have to wear a helmet to make her head more round. Between her 2 and 4 month appointment she had a nasty cold and I brought her into the doctor. My regular ped was out so we saw a different one. She remembered Gabby from the hospital- I guess my ped had her check her out too. She started talking about how Gabby will probably just need a bit of plastic surgery which is quite invasive in a baby so small- oh and she has an ear infection. Well, maybe this is not exactly how it went down, but this is what I heard. This is when I went home and started my google searching. Sure enough, there was a baby who looked like Gabby and here was the surgery they were doing to correct it. Not a good sight to see when I was just doing a little perusing for some info. The pictures were very graffic and I really freaked out. We then had Gabby's 4 month appointment and now my doctor thought it was time to see a neurosurgeon. I wonder if her partner- the doctor we had seen a week or 2 earlier- had not talked to her if she would have refered us or not? Who knows I guess. Anyway, she refered us to a neurosurgeon here in Green Bay. I asked if he was a pediatric neuro and she said no. We then pushed to go straight to Children's Hosptial which she agreed with. What if we would have just went along with her first recommendation and this guy would not have known what he was doing because he see's adults and may have no experience with craniosynostosis. We could be in the same boat as the other's with incorrect information and a baby who would suffer because of it. I guess I need to let go of the what if's and be happy to know what is going on. I just feel for those who tried so hard to get some information and answers for their babies, and their doctors failed them.