"As you know, we have been concerned with BB's right cheek being bigger than her left. Her pediatrician noticed it at her 4 month check up and we have been trying to figure out what's going on since. We saw a physical therapist who said that she seemed to be fine, no muscular issues, and to just do neck stretches during the day. The pediatrician wanted us to see a craniofacial plastic surgeon but we couldn't get an appointment until February 26. I wasn't satisfied with that so I started researching what could be going on. There is a condition called plagiocephaly (flat head syndrome) and it causes facial assymetry, specifically one cheek being larger than the other. I found a website that all but confirmed what I had been suspecting.
http://www.cranialtech.com/
We scheduled an evaluation and they saw us 2 days later. They were amazing. They took photos of BB from all angles and took detailed measurements of her head. From front to back, top to bottom, ear to eye, diagonal, etc. The average assymetry of a normal head is between 2-4 mm. BB's is 16 mm. The notes state this: "BB is a 5 month old female referred for treatment of her plagiocephaly. She presents with right occipital flattening, left frontal flattening and associate facial asymmetry. She has an ear shift with the right ear anterior to the left. Right parietal occipital flattening, left frontal flattening, right eye and cheek anterior to the left."
So, why is this happening? Well, since we put babies on their backs to sleep, there is lots of pressure on the back of the head. Since the skull is soft, it flattens out. BB has always preferred to look to her right as well as sleep with the right side of her head down. We noticed that she had this preference but every one said that babies just do that. So, when the doctor said something we really started to notice it. We can wait it out and see what happens. Or we can have her wear a DOC band for about 2 months to even out the shape of her head. The physical therapist we saw says that the surgeon we are scheduled to go see often plays the waiting game. But the longer we wait to treat it, the longer it will take to fix it. It goes from 2 months of treatment up to 5-6 months. You can check out that website for more details about the DOC band. She will have to wear it 23 hours a day.
I am very sad that she has to go through this, but I am grateful that it is nothing serious. I dare anyone to say something unkind about her. From what I've been told, the parents have a much harder time that the babies do. I hope that's the case. She is just such a happy girl and I don't want to give her reason not to be.
This is actually more than a cosmetic thing too. If we don't fix it, her eye socket and forehead will continue to protrude and could possibly lead to issues with her vision as well as a misaligned jaw."
So...I am freaking out and I can't quite figure out why. It just makes me soo very sad that BB has to go through this. I KNOW it could be so much worse and this is really nothing in the grand scheme of things. But it breaks my heart. I have just cried and cried and felt so bad for her. I KNOW 8 weeks is really no time at all...especially considering how quickly the last 5 months have passed. I don't want to have to deal with stupid people saying stupid things. I will not be nice if anyone says something mean or hateful. People are always coming up to me saying how pretty she is and what beautiful eyes she has. Today in Target a lady told me "she's' perfect!". I imagine that people will not say nice things about her with the band on. And that just infuriates me! Hopefully I'm wrong and am getting worked up for no reason. At least she is too young to know what people are saying and she won't remember this. I just HATE it! I will do it for her...but I HATE it!
Anybody had to deal with something like this? I need some love!
Oh, and did I mention that it costs $4000. And that insurance will not cover it? Yeah...nice, huh?
I thought I would include a photo that they took of her. Not the best pic of my girl, they slicked her hair down with water...but she's still a cutie.
They took several photos but I'll just share this one.
In this photo, you can clearly see that the top of her head is uneven and the left side (right side on photo) protrudes out towards the back. Her ears are also uneven. She has a Hemangioma over her left ear...she was born with it...in case you were wondering.
6 comments:
Your little BB will still be perfect. I would be freaking out as a parent too (I freak out about everything) but it really is relatively minor compared to a lot of things some people have to deal with. Not to minimize what you're dealing with, everything is a big deal when it concerns your child. Just focus on the fact that she's healthy and beautiful and thankfully her condition is treatable! Who gives a sh*t if people are rude enough to say something ignorant. There is a precious baby in our gymboree class who has been wearing a helmut for months to fix his "flat head" and in the same class there is a sweet little boy with cerebral palsy, it puts things in perspective. I wish you and BB the best.
I think she is the most adorable thing. I am sorry both you and she have to go through this process. My sister had a hip problem when born and had to wear a brace for much of the time for a while. It's true, we all adjusted to it fairly quickly. I was wondering if you had read parent testimony at that site? I was thinking it might affect a baby's sleep and was curious so searched "sleep" on the site and read "Lyla"s testimony . I thought it sounded reassuring and hoped it might to you, as well. Sending you best wishes and admiration of your advocacy and strength on behalf of your baby.
Sending hugs.
She is so beautiful, she is so perfect, and this will soon be just a memory to file away behind all the nice ones.
She is still the cutest baby (well, other than Cora LOL)
We will get through this.
Leah, I feel for you and wish I were there to give you a proper big hug.
I still think she looks perfect but as I read further that it could lead to other issues, then I agree to just do it.
You're right = she will be fine, won't even remember it, except for the pics in later life.
What does your hubby think about this?
Cranial Tech is great, but did you see the CFPS yet? The doc band can be very dangerous if there is craniosynostosis going on as well. We had this same problem with Lennon. Please email me!
Post a Comment