It's not a tumor

I don't actually remember seeing Kindergarten Cop when I was young, but for some reason the "it's not a tumor" line (in Arnold's voice) was a popular saying around my house. It's come to mind during the last few months as we have been trying to figure out what is going on with P. Bibby's eye. When she was about six months old we noticed that her left eyelid was looking somewhat droopy and the skin around her eye was red. I mentioned this at a checkup she had with the doctor, but she had an ear infection at the time and he thought it might be related to that. It seemed to be getting worse, and was definitely not getting better, so I asked again at her nine-month appointment. This time the pediatrician gave me the name and number of a pediatric ophthalmologist. When I called I was disappointed to find out that their closest appointment was in February, but I scheduled it anyways. Her eye was still bothering me and I decided to call back and plead for a better appointment time. We were able to move it to this past Thursday and I'm very glad that I did.

The eye doctor was very pleasant and I felt very at ease with him. I was amazed by all the things he did to be able to examine the eyes of a very wiggly, eleven-month old baby. He told me that her eye looked fine, but that her face was asymmetrical. In fact, the way he said it sounded like he assumed that I already knew that. I was shocked and somewhat embarrassed that I had never noticed it, but once he pointed it out the difference between the left side and right side of her face was glaringly obvious. His receptionist was amazingly helpful with getting us appointments in Salt Lake next Thursday for a CT scan of her head and a consultation with a pediatric craniofacial specialist.

The tentative diagnosis the eye doctor gave me is craniosynostosis, which means that one of the bones in her skull fused too early and so the left side has not been able to grow. At first I thought it might likely be the other possibility, which would be a flattened skull from sleeping on the same side, but when I found these pictures I was convinced. Several of them look exactly like P. Bibby's face. If we don't get a diagnosis of craniosynostosis next week I will be very surprised.

I'm actually glad I did some searching on my own so that I can know what to expect. The only real treatment for it is surgery and I'm glad I have some time to prepare for that possibility. Mr. Fob and I have already talked through the logistics and the emotional issues and I think we are prepared for that option. It will probably have to be sooner rather than later since she is nearly one year old. 2011 is already shaping up to be a much crazier year than I expected.

Comments

Recession Cone said…
Let's hope this is the limit of 2011's surprising craziness. =)
Best wishes.
Scott N said…
Good luck!
Julie said…
Are you kind of shocked and disturbed the pediatrician didn't pick up on it, cause I think I would be?
Cheryl said…
I'm with Julie --that kind of thing should have been looked into earlier!

I hope everything goes well with the appointments and that everything will go well from here on out. I know surgeries for babies are scary, but if it's the best thing for her, then go for it. #5 had to have surgery when he was 6 months old to remove a cyst that had fused (and was growing) to the bone above his right eye. Apparently it had developed in utero --but it was ME that found it. Not the doctor. So, even though these doctors should have figured this out sooner, I'm not surprised it was her mother that brought up the concern in the first place. You are a GOOD MOM. :)

Good luck!
FoxyJ said…
I do wish we had caught it earlier, but apparently it can be hard to tell. It has gotten much worse over the last few weeks but I still didn't really notice until the doctor pointed it out. She also hasn't been to the doctor since her nine-month checkup, which was two months ago. I am very glad that I did call and move the eye doctor appointment up. That's the main thing that frustrates me more than anything is the fact that it was so hard to get an appointment. Apparently Utah needs more pediatric eye doctors. From reading several people's stories online this is apparently something that can sometimes take a while to diagnose and many parents end up going to several doctors before someone will take them seriously. I have definitely learned to trust my instincts as a mom, especially after this.
Evelyn Theresa said…
Wow. I'm so sorry. Let me know if there is anything I can do to help. Primary is an amazing hospital, they really are very great there. Give me a call if you want to walk through anything. Sadly, we are extremely familiar with the CT scans, anesthesia, recovery, and all that fun stuff. It's so hard to watch a little one go through that when you can't explain what's happening. At least you know that she'll be in some of the best care in the world.

And seriously, if you need any babysitting or help or anything just give me a call.
The Weed said…
Oh wow. That's so unexpected and kind of scary--I'm sorry she and you guys have to go through that! I'm glad to know that she has the type of parents that persist and get things like that taken care of though. Good job and good luck!
Th. said…
.

If only we weren't so quick to say a baby's cute and think no more about it!
Desmama said…
I've heard of this before; I'm pretty sure a neighbor of ours had it when he was a baby. Things turned out fine with the surgery and everything, but certainly any surgery comes with some anxiousness. I'll be thinking of you and, of course, praying for you. :)
Nemesis said…
Oh man, I'm so sorry about all of this. I'll be praying that the surgery goes well and with a minimum of anxiety.

ps. We said "it's nadda tumah" at my house too.
Kristeee said…
Wow, that's the kind of thing you never want to hear as a mother. I'm glad you insisted on being seen earlier, and that Primary Children's is one of the best places in the world for kiddo care. Just when you were thinking you had everything all together, you get to throw the stress of infant surgery into the mix - not fair, if you ask me.

Good luck with everything, and keep us posted.

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