Tag Archives: schizencephaly

I Know I Don’t Know Much

In a past post, I’ve shared that our adoptive daughter, Eden, has a brain disorder called, “schizencephaly.” The longer we wait for her arrival, the more time we have to learn about this rare condition. Recently, we discovered two new things that provide insight into Eden’s special needs.

I always knew that schizencephaly was uncommon but I never knew just how extremely rare it was. There are currently no studies that have assessed the total number of people with the disorder worldwide, however one California study conducted in 2005 estimated that 1.5 in every 100,000 people are born with schizencephaly. That means an estimated 0.000015 percent of the population is born with this condition. Part of the reason why it’s so rare is because most babies who have schizencephaly do not survive past birth. What does this mean for us? There’s not alot of conclusive and helpful information about schizencephaly out there. It’s not a condition we can be plan for or predict.

Secondly, we recently learned that the separation in Eden’s brain may not only effect her mental and physical capabilities but even her emotional control as well. People with clefts in one hemisphere of the brain typically have paralysis on one side of the body. This is true of Eden. They also have many seizures. This is not true of Eden thus far. But, she has been known to have prolonged episodes of uncontrollable crying. Until recently, we never knew that this could be related to her disability. Of course, much of the crying can be caused by legitimately sad circumstances, her unique personality and/or even a sinful heart. The challenge will be to know how to respond appropriately when she has these emotional outbursts. Giving comfort, speaking the truth in love or even discipline could all be appropriate responses depending on the root of her response.

So, we now know two obvious but important things. One, because schizencephaly is so extremely rare, there is not a lot of information to prepare us to be well-equipped parents. And secondly, because the brain controls so many different aspects of personality and because Eden’s separation spans across many control centers, it will be difficult to discern what is a natural part of her personality that can be changed and what part is permanently effected by schizencephaly and cannot be changed.

All this is to say that we don’t know much about the current or future effects of Eden’s brain disorder. At times, this can feel quite overwhelming. Control is a favorite idol of mine that is not easily relinquished. The more I know about schizencephaly, the more obvious it is that I don’t know much about anything. All I can do is learn to trust and call upon Eden’s Creator. She is fearfully and wonderfully made in the image of God by God. Her brain, her personality and her entire life are all extremely rare because God created no one else like her in the world. He created her special. And because Eden has been specially created by the Father, then I feel special to be her dad. I may not know much about schizencephaly but I do know I love my daughter just the way God made her.

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Follow up Report

After posting yesterday’s entry, I received a report from the orphanage that was dated 12/16/10. It provides a sense of Eden’s disabilities and her gradual but definite progress over the past year. With the hindsight perspective of four months, I also have a greater appreciation of God’s sovereign timing and purpose. Here is the teacher’s report verbatim:

It’s just so amazing to see the changes in (Eden). Can’t believe a year ago, she was drooling all the time, her mouth looked crooked, can’t speak a coherent word, etc. Now, she’s growing more beautiful, capable, and confident every day. The doctor said that the tumor (schizencephaly) in her brain is not growing bigger. And since her condition is improving so much overall, it’s better we leave it alone. So we took the advice. We were told that it’s a miracle that she’s still alive. Every day we’re counting God’s blessings and rejoice in how well she’s doing. We are praying that there may be a loving family that will be willing to adopt her and invite her into their lives to share with her all the love and opportunities that she deserves…We’re praying for the Lord’s guidance and timing. We really have great hope that some day she will be adopted. Please join us in lifting her in prayer.

God is so good and so sovereign. Thanks be to Him!

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As many of you know, our future adoptive daughter has “special needs”. Eden has a rare brain disorder called “unilateral open lipped schizencephaly.” The word is so long, it doesn’t even fit on the title space to the left. In medical jargon, it is “a congenital cleft in the cerebral mantle.” From my understanding, this means that since birth, there has been a separation in her brain that starts from the central reservoirs of cerebro spinal fluid and extends outwards to the inner edge of the skull. While Sonia and I still struggle to fully comprehend the problem, we don’t need to be brain surgeons to notice there is something abnormal in the scan above. Although it is obvious to our eyes, there is still not a lot known about this condition amongst the medical community.  Currently, there are only two group studies being conducted for this disorder. One is at Harvard and the other is at the University of Chicago. If you are familiar with this condition or might know someone who does, let us know. We need all the help we can get.

The effects of this condition vary widely depending on the location and size of the cleft, but the most common are seizures and mental retardation. Thankfully, Eden has never had seizures nor does she suffer from mental retardation. But, she has suffered delays in her fine and gross motor skill development especially on the right side of her body. Her speech is also significantly delayed. From my understanding, the only reason Eden’s overall development has been steady, albeit slow, is because children’s brains are more malleable. Her brain has possibly overcompensated for the deficit so that she continues to progress.

I know I might be completely wrong in my understanding. I also know we won’t really know the extent of Eden’s condition until she receives a thorough assessment here in the States. Some have wondered if we might change our minds about adopting Eden now that we know how serious the condition is or how more serious it might grow to be. But for us, it was never a consideration because our love for Eden has grown so much that not even a schizencephaly can separate our hearts from her.

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