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The Diagnosis

Lissencephaly:

Our identical twin boys were diagnosed with enlarged lateral ventricles around 23 weeks gestation.  The next few weeks were hard, and involved a lot of worry.  Around 29 weeks, we first heard the term “Lissencephaly”.

Lissencephaly, which literally means “smooth brain,” is a rare, gene-linked brain malformation characterized by the absence of normal convolutions (folds) in the cerebral cortex and an abnormally small head (microcephaly).  Lissencephaly is caused by defective neuronal migration during embryonic development,  the process in which nerve cells move from their place of origin to their permanent location within the cerebral cortex gray matter. Symptoms of the disorder may include unusual facial appearance, difficulty swallowing, failure to thrive, muscle spasms, seizures, and severe psychomotor retardation.

The exact genetic mutation that caused their Lissencephaly is still unknown.  So more than anything, we are learning about them FROM them, as they continue to amaze and inspire us each day.  Their lives are precious, so we’re soaking up every single second.  And I’m documenting their journey here.

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2 thoughts on “The Diagnosis”

  1. Monica Ladell said:

    Hi There — I found this blog by Google-ing “lissencephaly in identical twins,” because that’s what I have! My two boys were born at 29 weeks — 11 weeks early! In utero, we were told that one of the twins (Max) had hydrocephalus, but an MRI after he was born showed lissencephaly. His brother Julian got an MRI as well, but we were told that a preemie his age would still have some smooth parts in his brain, so they’re not sure if his brain just needs time to grow, or he has liss as well…. time will tell but we love both boys more than I could have imagined!!! I wanted to let you know that stumbling upon your blog and reading about your journey has been the most comforting and inspiring thing I’ve heard/read since we found out our boys had some neurological issues. It’s been quite the roller coaster ride for these past few weeks but it is very encouraging to know that someone else out there is going through something similar and is making it through all of the craziness. Thanks for sharing — I am praying for your boys and look forward to reading more about their little successes!

  2. Nancy/John Arnold said:

    All I can say is….you guys are doing such a wonderful job raising Noland and Landon….you are the most exceptional young parents…..God surely is smiling on you…Splinter and Nancy

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