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.