Saturday, October 15, 2011


Last weekend the starter on my car broke down. My dad drove the 2 hours down, part in hand, and fixed the car for me in the Walgreen's parking lot. I have the greatest family. I am so glad that we moved back to Minnesota, to be nearer to them. I honestly don't know what we'd do without them. That's especially true now.

When she was born, my daughter had a small bump on her backside that looked kind of funny. It was a concerning spot, since it was right on the lower part of her spine. The doctors decided to do an ultrasound there in the hospital, and had to consult with an expert from a different hospital on the images. I felt so powerless as we waited for the results. After a few hours, the diagnosis came back as Tethered Cord Syndrome.

Fortunately, it sounds much worse than it is. Long story short, her spinal cord, which is supposed to be unattached at the base, is connected to a fatty growth. As she grows, this would stretch the nerves, causing problems with the legs, feet, bowels and bladder (and subsequently the kidneys). There's no indication of any damage now - quite the contrary, she's very strong - but as she develops this would get more and more severe, and any damage that occurs is likely irreversible. Which makes it really good news that we caught this when we did, because there's a surgery that can correct the problem.

It's a strange thing, feeling blessed that your newborn daughter needs a spinal surgery. But that's kind of how I feel. It could have been so much worse - tethered spinal cords usually show up with other problems, such as spina bifida, club feet, or other developmental problems, so having a diagnosis of just TCS is pretty lucky. And there's a surgery to fix the problem, soon, so that she'll never have to develop any of the complications that can occur as she grows. And we've recently become acutely aware of how big a battle some other kids have, which has really put this all in perspective.

Of course, surgery won't be easy. Heck, having the MRI and speaking with the surgeon was tough. We had to find someone to watch our son, we had to take time from work, and drive up to the cities, and sleep on the hospital floor (well, we didn't all have to do that...), and go through that whole nervous, helpless process of waiting to hear your child's diagnosis and the treatment plan.

But we've got family. And that makes it all easier. I can't imagine going through this if we were still in DC.

In December our little girl will have her surgery. I feel like I should have something profound to say about this topic - but the truth be told, in some ways it's just another thing. It's kind of like changing her diaper or cleaning up her spit up. Yeah, it's bigger than those things, but it doesn't change who she is or the way I feel about her, it's just another thing that needs to be taken care of. Whether she has Tethered Cord Syndrome or not, the way I see her doesn't change. Either way, she's my daughter. And either way, I love her. And either way, if she ever needs me to spend my Sunday driving several hours so that I can fix her car, I'll be glad to do it.

1 comment:

AGJ said...

We are praying Matt. I thank God for your doctor's abilities to find this. Thank God they found this so early.

God Bless Elizabeth and your family!