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Ocean Head

When Leo was two days old he got a quick-scan MRI of his head.  We did not see the results of the MRI until a few days before his release from the hospital.  On the day before he came home with us a team of doctors and nurses talked with us about his continuing care and we also viewed these images for the first time.  We hadn't seen what was inside Leo's head until that moment when these images appeared on the screen.    Indeed the images confirm Leo's diagnosis of hydranencephaly as far as we can tell.  In what is called the "supratentorial" region of the brain, or the cerebral cortex region, very little brain tissue is visible, hence the ruling diagnosis of hydranencephaly.  However, closer analysis from the top cut reveals that he has quite a lot of frontal lobe which appears squished but present nonetheless.     
We managed to get a copy of Leo's MRI images the other day (four months later).  Now that we have more time to analyze these images new questions arise. 
When I first saw these slides that day in the hospital I had to look away.  It was too painful.  Everything was so irreversible and tragic.  I wasn't sure what I was looking at, or what a "normal" newborns head looks like, but artistically it looks like he has a large body of water attached to his head.  It's like looking at the earth from space and seeing the oceans mingle with the land.  It still looks like that to me, almost beautiful, like he's wearing an ocean cap.
We are hopeful becasue it's pretty obvious that things have changed in there since his shunt has been doing its job.  With the "ocean" receding perhaps those land masses, which are undoubtly higher brain tissue, will emerger and prove us all wrong.  Until now, all we can do is wait and look at these phenomenol brain scans and simply marvel at the profundity of Leo's condition.
Thanks for all your prayers.
P.S.  Any brain specialists out there feel free to weigh in! 

 Side view cross cut. 

Top view cross cut.  


  1. Hey Guys! a lot more there than it sounded like from the original descriptions! It'll look so much different on the next 10 month scans given the relieve of pressure and expansion. One thing that is interesting is that frontal part is last to develop, but from the scans clearly there's cortex in the orbito-frontal area. It's a little hard to see but probably (and by behavior appears to be the case) but everything up through the diencephalon (ie all the subcortical areas responsible for filtering of senses and hormonal regulation and automatic responses, some attentional control, balance, etc) are there, and the telencephalon (the cerebrum) is pressed up front. It's amazing because the the vision areas are all in the back of the cortex, which appears to not be there but he can clearly see so either it is just squished up front or it very quickly rewired or some of both. Pretty amazing! I'm sure the 10 month scans will surprise everybody! I'm no brain specialist but this is an amazing and awesome little life. Marveling is right!

  2. Thanks Tim! Interesting theory about everything getting pushed up front. Doctor did note the presence of frontal tissue but he said it was abnormal. Does that mean abnormally squished in there or abnormally formed? Don't know the answer, but time will tell once we do a rescan. Keep it coming man!


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