Wednesday, October 19, 2011

An update on Finn, (the good and the...not so good)

So, Finn had his 1 year well check this morning. he is 24 1/2 lbs, 32 inches and is due for another growth spurt according to his pediatrician, since his head is huge and his body needs to catch up. He waved at her as she was coming in, and later walked to her, (shakily, but he did it!) He is on track with all his milestones, and all parts are running hot, straight and normal. I had made a list of questions to make sure I didn't miss anything, (which is what I usually do; hence the list.) As she was walking out, I remembered the last question. Here is how it went:

Me: "Oh yeah. Hey doc! Is his chest looking like it's growing on track with the rest of his body?"

Doc: "Let me look...I forgot about this. It looks like Poland Syndrome. I can't officially diagnose it, though. Off to see a Geneticist at UC Davis!"

Well, that is not exactly how it went. Let me back track for a second. When Finn was born, he collapsed his right lung. The nurse noticed something was off, (besides the fact that he was off color and not crying), when she saw the left side of his chest. It was caved in and there was no tissue supporting his left nipple. In any case, he was in the NICU for a week for a pneumothorax, (collapsed lung) and pneumonia. The only thing they mentioned about the left side of his chest was that there was no tissue for the left nipple and his ribs were abnormal. They said it wouldn't affect him at all; just a little cosmetic difference.

Throughout his well checks and various other appts, every time I mentioned his chest, they told me the same thing. He has had 6 x-rays throughout his one year of life and no one said anything about a "syndrome." He just looked a little different, (it's really not even that noticeable.)

Fast forward  to today: the only reason anything was discussed about his chest was because I wanted to be proactive in making sure it wouldn't affect him in life. That's the ONLY reason his pediatrician noticed. She looked up his patient records from the day he was born, the time he was transferred to Redding by EMTs and the reports of the NICU doctor, and they NEVER mention his ribs or the lack of muscle tissue in that pectoral area. Uh...why did no one address it? Should I have asked more questions besides just accepting his ribs are a little different, but nothing to worry about? I think, at that time, I was so stressed out that any good, "no problem" type news made me feel a little more relieved. Now...I'm pissed. Sorry about the language usage, but...why all of the sudden are we off to see a Specialist in Birth Defects ONE year later?

In any case, let me explain what Poland Syndrome is, (I have already researched the CRAP out of it.) This syndrome, (named after a man, not the country), is basically where the top ribs on one side are shorter than the other side, which causes the chest to look inverted on one side. In addition, they are lacking the two long, lean pectoral muscles that make up the chest on one sie. They are also lacking tissue for that sides' nipple. Some patients with Poland Syndrome also have shorter fingers or webbed fingers on the affected side, (thank God he doesn't have either. His fingers are NOT webbed and are the same length as his other hand.)

I can't help but feel like this is my fault. It's a genetic birth defect. Should I not have other children? Ah. So many questions. I guess this Specialist will have the answers. In any case, he is my love and he is gorgeous. It won't affect him in any way because all he will know is that he is beautiful inside and out and an amazing kid/boy/man. Prayers, please. Thank you!

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