Kennedy's Follow-up MRI

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Kennedy had another MRI on Monday, March 17th. She did really well considering she was actually awake for this one.  They even let me stay in the room with her.  When she had her MRI's in the NICU I wasn't allowed to go in the room where the MRI machine was.  I wasn't even allowed to be in the MRI area while it was going on.  I had to wait for her to come back to her bedside area.  It was nice to be able to be there with her this time.  The MRI tech said as long as I didn't put my hand above her face, I could even reach in the tunnel and console her.  Luckily I was able to give her her pacifier and she settled down.  The MRI didn't take more than about 10-15 minutes.  This was also a treat compared to the other MRI's she had in November which took 1-2 hours.  After we finished up in the MRI lab we had a follow-up appointment with Dr. Stevenson, the Neurosurgeon.

He showed me the images of the MRI and explained what each picture meant.  The good news is Kennedy's Chiari Malformation/Hindbrain hernia has reversed itself even more since the MRI in November.  This in and of itself is a miracle.  Majority of the time the reversal happens in the womb and will not reverse any more after birth.  To look at the picture of the Chiari, you can barely even tell it's there.  Or at least I couldn't with my untrained eye.

While I was ecstatic to see the reversal, I became alarmed when Dr. Stevenson began talking about Kennedy's ventricles.  They have grown quite a bit since her MRI in November.  Before we had wiggle room, now there is no more wiggle room.  Dr. Stevenson doesn't want to see them get any bigger.  Luckily she still has fluid between her skull and her brain so she isn't developing signs of Hydrocephalus, which is a common condition among individuals with Spina Bifida.  We are praying that her brain begins to absorb some of the fluid before her next MRI in May.

Even though Dr. Stevenson didn't discuss it, I'm very worried that we are on the road to needing a shunt (a one-way tube that is inserted into the brain ventricle to drain excess spinal fluid from the brain to the stomach). I'm not as freaked out about it as I was when I had the fetal surgery thanks to parents in my Spina Bifida group whose children have them.  If Kennedy does need a shunt I pray that it will be when she's much older.  The symptoms of a malfunctioning shunt are so subtle that I am afraid I'd miss something until it was too late.  Hopefully this isn't a bridge we will be crossing anytime soon, if at all.

For those of you who are not on Facebook, here is a picture of Kennedy at 4 months old!!


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