Monday, June 10, 2013

SB Clinic and Heterotopia

We had quite the uneventful spina bifida clinic on Friday. Clinic is basically like pediatrician visits for children with spina bifida (though we still have our regular pediatrician visits as well). We're currently scheduled to go every 3 months for check-ups with all the spina bifida specialists. Eventually it should become a once-a-year event. People travel from across the state and even from out of state to come to come to clinic in Salt Lake City. I hear loads of horror stories about clinics in other places but I don't hear many complaints about the doctors at Primary Children's. We are SO fortunate to be living here right now.

The hardest part of clinic is that it can last all day depending on which specialists you need to see and what procedures need to be done. This time we had 3 hours of doctor visits, one hour of a bladder study, a 2 hour break, and then a 30 minute renal ultrasound. We met with genetics, social work, physical therapy, occupational therapy, neurosurgery, urology, dietetics, and a nurse practitioner. (Orthopedics and neurology were not there) Most of them didn't say anything blog-worthy. Evan was a rockstar!

The iPad camera was an excellent distraction in between doctors
Waiting for the VCMG
Lunch break! Oh, how I love the memories of hospital food

After 7 hours at the hospital, Evan finally crashed
The most interesting discussion at clinic was a neurological finding from Evan's brain MRI. We've known about this since our fetal MRI that was done last August but it's just now becoming meaningful for us as we see how it is influencing Evan's development. Evan has periventricular heterotopia in his brain. Basically, our brains have grey matter and white matter that should separate during development. Heterotopia is when some of the grey matter doesn't migrate properly during development so there is grey matter left in the white matter. Like spina bifida, the symptoms of heterotopia vary widely. Some people don't even know they have it until they have an MRI done while others may have severe seizures, loss of motor skills, or mental retardation.

Evan's current display of heterotopia seems to be somewhere in between. He has high muscle tone and is typically very rigid in his upper body. His hands also tend to be fisted. Some of his fine motor movements resemble someone with cerebral palsy. Chances are his fine motor challenges are caused by the heterotopia and we should be able to work through this as Evan continues to grow. For now we're going to increase his therapy and monitor him closely with neurology.

I'm not really worried about these findings. It's actually exciting for me to learn more about the brain and how it relates to some of Evan's behaviors. I have a CD of Evan's fetal MRI images which I'll share as soon as I can find it...Who gets to see real images of their child's brain?!


  1. I've known for a long time what a wonderful person you are and later I knew that you married someone just as awesome. NOW, it is apparent that our Heavenly Father sent one of His choicest spirits to be in your family, because He knew that Evan would be taught and nurtured by two loving parents. Evan is blessed and so are you.

  2. I love seeing the little love bird going to clinic. Nice images of the "many moods of EM." Grandma would have been snoring by the first hour, not the 7th, We just love the little guy.