Tethered Cord Syndrome

So it's 7:10 in the morning, and I am sitting in a quiet kitchen all by myself. This is odd, and it definitely feels very strange. Richard and the girls are on their way to Children's Hospital in Minneapolis where Maddie will undergo two tests today to determine how effectively her bladder and kidneys are working. Richard is on his own with the girls today as I have to go to my doctor for my pre-op physical.

Okay, so let's back up. Maddie has a soft, fatty mass in the small of her back. This was NOT noted in her medical reports from China, but we noticed it the first day we met her. Because we had previously reviewed the file of a child with spina bifida, I had done a lot of research on it as well as its related maladies. My first thought upon seeing the swelling near the base of her spine was that she had some form of spina bifida, but many of my fears were allayed when we realized that Maddie was completely potty trained and that even though she couldn't walk because of her lower leg deformity, the movement of her lower body was not compromised in any other way. So let's jump ahead to October of 2009 as we prepare for Maddie's foot ablation. The doctors wanted to have an MRI of Maddie's spine just to be sure there was nothing there that would interfere with the planned operation. The MRI was performed, and the neurologist gave the go ahead for surgery with the stipulation that we would meet with him after the beginning of the new year to fully discuss the MRI and its implications. In February, we finally met Maddie's neurologist and went over the results.

The fatty tissue that is visible on Maddie's back, called a lipoma, is a non-issue. It is not cancerous, nor will it ever turn cancerous, and it does not in any way impinge on Maddie's mobility. What is of concern is the fatty tissue that resides within the spinal column itself which is what the MRI revealed. The spinal column is meant to float free, so to speak, in fluid, and if anything, fatty tissue for example, attaches itself to the spinal column, lots of problems can occur as a child grows and the tissue begins to tug on the spine. The name for this condition is Tethered cord syndrome. The disorder is progressive, and left untreated, abnormal stretching of the spinal cord will occur as a child grows resulting in sensory and motor problems and loss of bowel and bladder control. Tethered spinal cord syndrome appears to be the result of improper growth of the neural tube during fetal development and is closely linked to spina bifida. It is also the cause of Maddie's lower leg anomaly which was a surprise to us. We had no idea the two conditions were at all related.

So though Maddie is potty trained, we have no idea what's really going on with her internal organs, so today's tests will determine if kidney and bladder function are normal. If they are, we may not need to do anything right now other than take Maddie in for a recheck every six months. It is highly likely that Maddie will require surgery at some point to remove the tissue attached to her spine, and Richard and I think that an operation will probably be needed sooner rather than later before there is any loss of mobility or incontinence becomes a problem.

So there you have it. I don't expect that we will meet with the neurologist for a few weeks, but when we do, we'll know more, and then we'll take the next step...whatever that may be.