Poland's Syndrome

On Thursday we took Lindley to a pediatric surgeon to have her ribs/chest looked at. We weren't looking to have anything done, we were just ready to have a better understanding of what happened and maybe an idea of what could happen in the future. I am SO happy we did!! We have already learned so much! The surgeon originally told us it was one syndrome and stated that it was purely cosmetic and that her case was mild. He said it was very rare and he couldn't remember the last time he had seen it. He stated he didn't know much about it and would send us additional information. When I received the email later that day it stated that the surgeon had talked with the genetics specialist and he said it sounded more like Poland's Syndrome. They sent us some information regarding it and it sounds/looks just like Lindley! Even the dextrocardia is associated with it. Basically, she has a deformity in her chest wall and pectoral muscle. More than likely she will not even develop a breast (we were prepared for that and are fine with it, that can be fixed as we all know well). At this point that appears to the only issue she will have. We will monitor her and at some point probably have some additional test to see exactly how her ribs and chest are shaped and make sure there is room for everything. We are going to see the genetic doctor to gain a better understanding. However, it's purely for informational purposes. Plus, this VERY rare and I am sure he is interested in seeing her and learning more himself. We are so relieved to have a diagnosis and understanding. We knew she was healthy, but it's good to be able to explain exactly what she has.

I knew she was special, but couldn't really explain it. We are so blessed to have such a rare and wonderful little girl!!

Here are two of the articles they sent us. Keep in mind that the only similairity that all Poland's Syndrome patients have is the deformity of the chest wall. The other symptoms vary, for example her fingers are not webbed. Also, at this point it appears her case is very mild because the dip in her chest is not as severe as others. Of course as we learn more we will share.
http://jtcs.ctsnetjournals.org/cgi/content/full/130/5/1471

http://www.ijponline.net/content/36/1/21