Friday, September 21, 2012

Still Can’t Believe What My Ears Heard Today

Yesterday Selah had her appointment with her neurosurgeon and her craniofacial reconstructive surgeon.  Both agree that Selah will NOT need her second phase of skull reconstruction unless her shunt fails.  Selah doesn’t have to be seen for another year, unless she experiences complications.  Oh how we rejoice with this awesome news!!!


During this appointment, we learned quite a few new things about Selah’s brain and diagnoses that had somehow never been explained to us before.  We explained to the doctors our concerns regarding Selah’s inability to self-regulate, her severe sleep disorder, and her extreme need for constant movement and unsafe risk-taking.  Selah’s neurosurgeon patiently listened to us, then explained why these things are occurring.


Selah has the diagnoses of holoprosencephaly with agenesis of corpus callosum with hydrocephalus with a Chiari Type II (graded on a scale of 1-4, with 4 being incompatible with life), as well as multiple congenital brain injuries and anomalies, most likely due to physical abuse and trauma in utero, as well as drug and alcohol exposure in utero.


Whew, that’s a mouthful, isn’t it?!?!


What does all of this mean?


Selah is even more of a miracle than any of us ever realized.  I’m still in shock after learning all of this.  We looked at pictures of Selah’s brain, and Dr. George pointed out all of these white spots.  He explained that the white spots are calcium deposits that occurred after trauma in utero.  Break my heart.  Those calcium deposits block pathways and brain cells from forming, and can cause a host of other issues.  Over time, we may notice more and more problems caused by these deposits.


Here’s what I found online regarding calcium deposits in the brain:

As said before, calcium deposits can be found anywhere in the brain, and may lead to some mild to severe mental disabilities due to loss of brain cells. The symptoms mainly include progressive deterioration of mental abilities or dementia, loss of previous motor development, spastic paralysis and in some cases, even athetosis, the twisting movements of the hands and feet. Some other less common calcium deposit symptoms in brain are vision disturbances (optic atrophy), blurred vision, ear infections, traits of Parkinson's Disease including tremors and rigidity, muscle cramping or dystonia, a mask-like facial expression, uncontrollable spasmodic irregular movements or chorea, seizures, shuffling walk, and a pill rolling motion of the fingers.

I also discovered via Dr. Google that every complication/defect in Selah’s brain can be caused by any of the things Selah was exposed to in utero:  drug and alcohol exposure, trauma, poor maternal diet, lack of vitamins/nutrition in birth mother’s diet, and infections in birth mother such as syphilis.  I find myself feeling sad, so, so sad that a birth mother could do this to her baby.  That’s probably not right for me to feel that way, but right now, that’s how I feel.  Selah is such a special treasure to our family.  We just praise God for preserving her life and for sharing her with our family.


We would be most grateful if you’d hold Selah in your prayers, asking for protection against any further complications caused by her congenital brain defects.  There are so many possible complications that commonly occur as a child ages, so we pray against all of these things.  It’s such a miracle that Selah’s alive, and even more miraculous that she’s reaching so many milestones and thriving.  I simply cannot fathom all of this, much less process it adequately.


I thank you all in advance for praying.  Selah is so very dear to us.  Thank you for lifting her up.


Selah mucking the horse’s stall.



Selah wearing big brother’s boot and boxers.

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