Home from Birmingham: Spinal Cord Split Confirmed, Next Steps Outlined

We are home from our quick overnight and successful morning consult with Dr. Oakes, a pediatric neurosurgeon at Children's Hospital of Alabama who is well-known and respected in the field.  Many mant thanks to good friends and neighbors who cared for Jared, Anna, and Tad overnight!

First off, Lilly did great.  The car ride both directions (about 5 hours each way) was a piece of cake (thanks, in part, to the 2.5 hours I spent earlier in the day configuring her new "Leapster Explorerer" handheld game so she could play it).  She showed very little of her usual anxieties at the hospital, and even gave a few of the staff small smiles and waves, especially after a trip to the treasure box.  She was even willing to show off her ability to run for Dr. Oakes, as part of his exam.  What a difference from just about a year ago, when the one-hour car ride to her first ortho appointment seemed an eternity because of her wailing, and the entire time spent in the office she clung to me and cried inconsolably.  When we arrived home today, she announced within minutes of walking in the door "I didn't cry!"  That is a first for any type of doctor's visit for her. 

Second, we were really impressed with Children's of Alabama--they were friendly, efficient, and Dr. Oakes was great at explaining what he saw in Lilly, what the research shows in cases like her, and what next steps should be for her in preparation for her VEPTR surgery. 

Having reviewed Lilly's MRI and CT scans from CHOP, he explained that Lilly's spinal cord splits in two in the upper part of her spine, and then re-attaches to itself lower in her spine.  It is held down and "tethered" at its lower end by either bone or cartilege, which means that as she moves around, it can be stretched and pulled.  For now, this is not inhibiting her in any way that is noticable.  Left untreated, however, studies show that by the age of 15 she would almost certainly lose function of her legs and control of her bladder.  Moreover, if we were to proceed with her VEPTR surgery without first addressing this problem (something Dr. Campbell would not do), it would result in unspeakable damage to her spinal cord. 

The good news is that he is confident he can treat her surgically and prepare her for her upcoming "BIG" surgery on her spine.  He pointed out the irony of considering a spinal cord surgery to be the "little" surgery, but in Lilly's case, that's what is is by comparison.  This initial surgery will require probably 3-5 days in the hospital, and he expects we can get it scheduled in the next few months.

Next steps in preparation for the spinal cord surgery include additional X-ray and CT scans to look specifically and in greater detail at certain parts of her spine and a urinary neurological function test, to see how well Lilly's urinary system is innervated and how the surgery on her cord might impact her bladder control.  Neither of those things will be fun for Lilly--she has already informed me that that she WILL cry when they take more x-rays.  But she is a trooper and I know she'll be fine. 

We will work with Dr. Oakes' staff on scheduling these, hopefully in the next few weeks, and then get the surgery scheduled from there. 

Thanks for your prayers for our sweet spunky girl, for safe travels, and for Dr. Oakes.