Saturday, February 13, 2010

Le Noggin

Stella turned 10 weeks old yesterday. I have never mentioned this before, but it is something that has been weiging heavily on my mind. A few weeks after the little lady was born, I noticed a small flat spot on her head- in the front, on her left side. I knew that it was not a flat head from sleeping type of flat head because it was on the front of the skull as oposed to the back. I  kept quiet about my observation for a little bit, knowing that a baby's head is fairly maleable up until about 6 weeks. A couple weeks passed, and I mentioned it to Mindi. She had noticed it too. The malformation seemed to be getting more and more obvious, but we couldn't tell whether it was becoming more obvious because we kept staring at it, or if it was more obvious because it was physically becoming more mishapen. We brought it up to her Dr. at her 2 month appointment, and the Dr. agreed that we should take her to the Noggin Specialist. She gave us a referral, and we are now waiting for a call from them.

Over the last few days. we have done some research and realized that her condition is most likely a congenital birth defect and there are 3 courses of action, depending on the severity of the case.

1. Do nothing, because the sutures in the skull are open and shifting as they should, despite a minor malformation.
2. Give the child a helmet that is typically worn for about 3 to 4 months to help the skull resume the proper shape, assuming the sutures in the skull are open and shifting.
3. Surgery on the skull to open the sutures that have improperly fused, and throw a few plates in for good measure, some time in the NICU, and lots of tears and heartache...

Choice number one is most likely out for us because of how misshapen her head has recently become. At this point, we are just waiting for our appointment so the Dr.s can figure out if her sutures are fused or not. I REALLY REALLY hope that she will simply need a helmet to correct this. Has anyone else had this experience, or heard anything about it?

10 comments:

  1. Findingchaos.com.Their son had to wear a helmet.

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  2. Thanks Malea- I have read about Mr. B at finding chaos- thank you for the heads up though!

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  3. Lynn: Just going to point you to http://findingchaos.com/ chaos too! Two moms and one is a pediatrician.

    Best wishes!
    S

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  4. Im sure it will be as simple as a helmet. Let me know when you hear from the "noggin specialist!"
    on a side note: wow, her hair is still so red!!

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  5. Just to reiterate that the ladies at findingchaos.com had problems with Mr. B's head... I scanned all morning in between tasks for their posts about it, I think I found the earliest one... The link is
    http://findingchaos.com/2008/09/18/another-noggin-update/

    So that should give you some encouragement against needing surgery... And they were even recommended to use an Amby bed before a helmet... So, chat them up! :D

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  6. Hi Lynn- I am trying to post from my phone, so I hope this works... Anyway, is the helmet you're referring to called a Doc Band? If so, I've known a few kids who had to wear one, and while it's a tad annoying to deal with, it's really not a big deal at all. You can even decorate it all cool to make it a little less helmet-like, and I'm sure you'll come up with something awesome :). (You can Google it to see what others have come up with-- there are tons of pictures to be found.) Hope that's what the doctor suggests!

    Crossing my fingers for Stella,
    Christine of "thebaffutosmadeababy"

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  7. I have worked with a few children who have had craniosynestosis (early fusing of the sutures) and a good friend of mine (high school ex-bf, to be specific) has two (yes TWO! what are the odds?) children who have needed the surgery for craniosynestosis.

    I will say this: it is much more traumatic for the parents than the babes if she has to have the surgery. Little tiny babies heal REALLY quickly, and the surgery is pretty standard, fairly quick, and they have perfected it so as not to mess with the hairline or whatever.

    I hope you get your "noggin doc" appointment soon and I am praying for good news. But if it's not the news you hoped for, you will make it through. I can hook you up (virtually, of course) with my ex-boyfriend if you wanted to talk. He's really great and approachable.

    Loving on you. E-mail me if you want to ask more questions, I can give you the 411. judecorp at gmail.

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  8. Hi Lynn,

    My partner Katie, who reads your blog, asked me to read your entry today to see if I was able to offer any insight. I'm a chiropractic student specializing in pediatrics. I can only imagine how stressful this must be for you.

    Obviously, I have not examined your daughter. But my first thought when I read your post was to consider why we have sutures in the first place. When the baby goes through the birth canal the sutures actually fold over each other to allow the baby to come through the canal. Post birth they usually return to their normal position and sort of float next to each other allowing for normal expansion of the brain and flow of cerebrospinal fluid (CSF)around the brain and through the spinal cord.

    Sometimes, for a variety of reasons that I won't bore you with, these bones don't move back to their normal position. Your situation could be just as simple as this. I absolutely suggest following through with your noggin specialist. However, I also recommend (especially before you consider surgery or even a helmet) having her evaluated by someone who specializes in craniosacral therapy. You can check it out, it's a very gentle technique used to help the bones in the skull find their way back into their proper position. When aligned properly the nourishing CSF will flow freely throughout Stella's nervous system and this is vitally important to her overall health and function.

    There are several types of therapists who use this technique. Of course I'm partial to a complete chiropractic evaluation and you can find a pediatric specialist near you at www.icpa4kids.org. That being said, a personal recommendation for someone you know to a practitioner who is great at cranial therapy would be the best regardless of their specialty. I wish your family the best of luck!

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  9. Mr. B's momma here... he was in a Star Band for about 4 months, 23 hours a day - I really had to push for the helmet. Even the specialist said he thought Mr. B's noggin would round out by the time he reached adulthood. I wasn't comfortable taking the chance. Even now, it's not perfectly round, it's now symmetrical thanks to the band and wow - it's sooo much better than before! There is a great yahoo plagio group. They might have some insight for you. I will say this - Mr. B handled the helmet great, I had the hardest time with it. I hope you get into the specialist soon - time is of the essence, so much growth is happening right now! Lemme know if I can help in any way! :)

    Check out Totally Smitten Mama for their alternative to an Amby bed (the Amby was recalled, which does not surprise me) http://totallysmittenmama.blogspot.com/2009/08/totally-gear-smitten-mama.html Not sure if that would help since your little one is not flat on the back of the head??? But worth a look.

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  10. A friend of mine's baby was born with the same thing. She is now 12 weeks old. They took her to doctors at Johns Hopkins, not entirely sure what they did there, but they are currently still shifting her position as she sleeps and keeping an eye on it. I think the doctors are not worried unless it turns into a true fusion, in which case, surgery will be necessary. I'm not sure at what point they decide on that. But like I said, she's 12 weeks and they're still working on it, so it would appear you still have some time. If I hear anything else from them about the subject, I'll let you know.

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