Monday, May 24, 2010

Microcephaly



Basic word dissection will tell you that microcephaly means "small head." This is my latest and greatest worry over Sadie. Microcephaly is diagnosed when a child's head is lower than the 3rd percentile for their age. Last Monday I measured her head size and typed it into a website that told me she's in the 3rd percentile. She hasn't always been there, that means her head isn't growing as fast as it should.

I quickly started researching, and, as you probably know, the internet can be a blessing and a curse at the same time. I am finding this out VERY QUICKLY!! I saw videos of babies who had big bodies with tiny heads. I read things that said people with microcephaly have shortened life expectancies. I saw pictures of deformities. I read more, I watched YouTube videos, I read more, and I read more and I read more. And all the while I was crying, hysterically at one point. Was my baby's life expectancy going to be shortened? Was she going to look funny (this seems vain, but this is my biggest fear for my child...I don't want other kids to point and ask questions when we go out in public)? She's doing so well now, was her progress going to slow down and cause her serious developmental problems as she grows? I freaked out!!

Then I started to get smart, instead of hasty, with my research. I started "talking" (typing is more like it) to other moms with babies who have HIE. One mom, Sophie's mom, told me Sophie had a severe drop in head growth at 4 months, but by 6 months it had jumped back up to be proportionate to her weight and height. That was encouraging, especially since the pictures I've seen of Sophie at 4 months look very similar to Sadie. Another mom, mom to twins Ethan and Noah who both had HIE told me that Noah is the smaller of the two and has been diagnosed with microcephaly. She explained to me that 1. his body grew in proportion to his head, so he didn't have a tiny head, he's just a small kid, and 2. he's still testing above grade level in school despite his microcephaly. This information helped me breathe a little better and wipe my eyes of the tears. Finally, a third mom, Aaron's mom, told me that his head dropped from the 75th percentile to the 25th percentile and his soft spot was really small, it leveled off for a while, then jumped back up to the 50th. All of these stories of people with REAL experience (not scientists and neurologists) made a huge difference.

I also dug a little deeper on the internet and learned that there are two kinds of microcephaly. There is PRIMARY microcephaly (this is the scary kind that you will find info on if you just google it), which is caused by gene mutation. And there is SECONDARY microcephaly, which is caused by HIE, and stunted brain growth due to injury. AAHHHHH, so they're DIFFERENT! So, all this horrible stuff and these sad sad pictures AREN'T going to be my baby, even if this is her diagnosis. Well, THAT'S a relief!

The next day, we saw the pediatrician. She measured and re-measured Sadie's head, but she came up with the same measurement I did the day before. And she confirmed that Sadie has dropped from the 18th percentile to the 5th. Now...that's awfully close to that 3rd percentile, but at the same time, she had a small head to begin with, so she didn't have very far to fall. There was talk of microcephaly, but no talk of actually labeling it that yet, only conversation of an MRI at 6 months to see what's going on in there. I cried in the doctor's office. But it's okay, and I'm okay with it, because, like Brian says, Sadie is Sadie no matter how she turns out, and we love her because she's her, not because she's in a certain percentile, or because she can do certain things at a certain time that are considered "average." And that is also what the pediatrician confirmed in her words of advice. (It's sometimes hard for me to hear advice from people who have perfectly healthy kids, but she shared with us that her husband uses a wheelchair, so I felt like their family also lives with a disability and so she understands.)

There isn't a lot of information on the internet (that's written in layman's terms) about secondary microcephaly caused by HIE, but I did find this article. It's a little heavy in doctor-speak, but basically it says that Sadie will probably have suboptimal head growth, and she may end up with microcephaly. However, it sounds like those kids who DO have this diagnosis, also have severe motor dysfunctions...and Sadie doesn't seem to have a problem with that. So, again, I'm given hope that since her motor skills seem to be developing on course, that her brain will support them, and in order for it to do that, it MUST grow. And maybe we'll see the jump at 6 months because that's when motor skills start getting more complicated than kicking, holding her head up, and bearing weight on her legs. The waiting is the hardest part.

Oh, and I measured her head again tonight (yes, because I'm crazy and obsessed) and it's grown half a centimeter since last week. So, that's good.

Let me know what you find or have found about secondary microcephaly out there. Paste the link into the comments section if you want. I only say this because I know some of you love to scour the internet for all sorts of obscure articles and information. So, if you find something I'd love to read more about all this!

And one more thing...I somehow forgot to post the picture of Serkan holding Sadie last night. Thanks mom for pointing it out! Here it is!

12 comments:

  1. Oh Christie, this must be so hard...I have no words of wisdom on the subject. Just prayers for peace as Sadie grows!

    She's such a little bundle...I just love her! :)

    Amy & Joaquin

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  2. Hi, I'm a mum in teh UK with an HIE baby girl called Sophie. Just reading this article was where i was Friday last week. On our return from Sophies 4 month check I googled why her head might not be growing (such a bad move!).
    There is hope, maybe my babies head will grow, maybe it won't, maybe she'll be clever maybe she won't, but she will always be my fighting baby girl x

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    1. Hi Sarah, do you mind me asking how Sophie is doing now?

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  3. When S was a baby, our first paed was obsessed with measuring his head. In fact, that was just about all he would do at the appointments. Measure his head. Ask me some questions. Try and get him to sit up. Ask me some more questions. And then, at the end tell me 'Well, we will just have to wait and see'.
    I hated that paed, his head measuring obsession and his 'wait and sees'.
    Luckily, I didn't know anything about microcephaly at that stage (I well and truly stopped googling very early on, too scary by far) or I am sure I would have been measuring his head non-stop at home :-).
    We changed paeds and we've stuck with the same wonderful paed until now. At our first appointment, way back when S was 12 months old, there are only two things I remember 1) That we got a diagnosis of cerebral palsy 2) That, thank god, she didn't measure his head.
    I have no idea why it bothered me so much, but interesting that it bothered me more than the diagnosis of a life long disability (which we pretty much knew was where we were heading anyway).
    I know this post is quite a few months old. I hope that Sadie hasn't since had a diagnosis of microcephaly, but if she has, we know several amazing children who defy all the odds and are going great guns, despite having been given this label.

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  4. Thank you for this.

    I have a ten-year old daughter named Wren with moderate HIE and damage to the basal ganglia. Our head size is still within the 'normal' range, but it's the low-ish end of normal range, and we're in that same 'wait and see' situation you describe. It's really hard because she seems so normal in so many respects and then we start believing everything will be okay, that this is just a temporary bump to overcome. But we need to start thinking about the long-term...

    Do you have any feeding difficulties? Wren takes about 30-50% of her milk via bottle and the rest down an NG tube... which is an incredible improvement, believe it or not.

    Anyway. Thanks for posting this. We're googling and reading and finding you and youre helping strangers more than you know.

    Nic M.

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  5. Ten year? I meant ten-week. I need more sleep, clearly!

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  6. I, too, have a baby with HIE. She was born in the 75th percentile for head size. She is now 6months and is below the fifth percentile. Heres the thing... Most importantly shes developing new skills every day and she is presenting as a normal six month old in all areas. Im begging all of you to look into alternative treatments. We sid and are so grateful to have been guided in the right direction while our baby is young enough to greatly benefit from it. We began hyperbaric oxygen treatments... An actually low risk and simple treatment. We are currently on our 24th treatment out of 40. After only five treatments our daughters high muscle tone shes had since leaving the NICU at three weeks old completely went away. She now easily reaches for objects over her head. Some kids show unbelievable results form HBOT, and yet mainstream doctors wont prescribe it bc it is not yet standard treatment. Valleyhyperbarics.com is out practice. The website has info. For me, it is so important to know that we are doing all we can to help our girl. Anything that can help her and is low risk, we are willing to look into. Another suggestion is to ask for a full metabolic work up. Many times with HIE there are inbalances or GI issues or malabsorbtion of essential elements. A blood test can help you figure out if your baby needs supplements so that his/her body is getting and absorbing all the nutrients it needs to support healthy brain growth. Best of luck to all of your famlies... What a ride this is.

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  7. i have to a baby with microcephaly...thannks for the information at least my child can cope well with his gross motor skills...

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  8. My daughter had severe hie...she now has acquired microcephaly with global delay!!! She makes progress slowly but is an absolute joy!!

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  9. my baby born with HIE, but no staging was done then. i dont know whether he comes in mild or the moderate stage, he is 14 weeks old, every ting seems normal about him but his HEAD........it looks smaller. it measures 40.5cm but it just looks small to me :( .. i hate to see same aged kids having big heads like water melons.. my baby touches the 25th percentile though, but the un assurance from doctors and this heck internet just drives me crazy.

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  10. my babay now is seven month old she also diagnosed with microcephaly according to the pediatrecian baby alexa might have a miniature brain..my dear parents just have faith HIM..our almighty father he will never give us a burden heavier than we carry life must go on..he wabts us to be more happy than sad..

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