One Girl with Two Backs of Steel



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On July 31, I did the one thing I’ve feared for 10 years. I let my child go into surgery for kyphosis. It’s hard to describe those 10 years of thoughts-the being told surgery was inevitable, being told that her curve was so severe that she would need to spend 6 weeks in halo traction, being told that there’s a fine line between doing the surgery and chance major complications before it was absolutely necessary and being too old to really recover well but no one telling me where that line was, to walking into her new ortho’s office 2  years ago and having them come in after xrays and wanting to set up a surgery date right then.

For 10 years I weighed the following scenario… doing a surgery that could have major complications that MAY improve her quality of life OR could decrease her quality of life and on the other hand there was the knowledge that before she really, really needed it around 30 or 40 would she still be alive anyway. Yes, that’s the harsh truth of Rett syndrome, sometimes you have to factor likely lifespan into your decisions. And, like many truths, that’s hard to face.

In the end, she didn’t need halo traction, I decided that the fine line would be lung complications and was able to hold off two more years. But, when an MRI showed that her lungs were beginning to collapse I knew the line was crossed and the time was here.

So, Katie and I sat in the ortho’s office and listened to the possible complications- major infection was the most likely, a 1:5 chance. That would mean multiple surgeries, a PICC line, antibiotics for a year. Then there was a “neurological complication” possibility ranging from minor to paralysis. Then there was death. And then, I said let’s do it and my girl cried and cried. NEVER let anyone tell you a person with Rett syndrome doesn’t understand.

So, not to keep you all in suspense, my girl was a warrior. She faced it all with strength, determination and the proverbial back of steel. She’s not once given into the pain, not once refused to do her walking exercise, understands that she has to relearn to walk with stability and doesn’t fight being held on to any time she’s standing. She even has to relearn how to feed herself at a table because she’s over 6 inches taller. After a lifetime of being below my shoulder, we can now look straight into each other’s eyes. (being as I’m height challenged, lol)

But, what she has faced with such resolve, has been a trial for me. I had to see her in the ICU with tubes everywhere; even now, two weeks later, she has bruises all over her body. There’s the place on her chest where they tried to put in an IV line, yes they were unable to stab through her chest into a vein for her IV so they stuck it in her neck. Having been a phlebotomist, the places they missed getting an IV were obvious to me and many. Sometime in her sleep that first night, she kicked out the one in her foot. I was so tired, I never even knew. I saw her on a ventilator. I saw the outright fear in her eyes as she gagged and choked on it before they removed it. And, even today, when her bandage was removed, she clapped her hands. Me? I had to step out and pull myself together to look at it.

Through all of this I reminded myself of one simple but enormous truth- I was lucky and so was she.  She was alive, she was coming home and this has been the only major surgery/hospitalization I’ve ever had to face since she was three and had status epilepticus. So, in her 25 years, that’s two. Some parents face 2 in a month. There are parents who have probably lost count of how many times they’ve seen their child on a vent. And there are many who didn’t get to bring their child home from this surgery, having developed complications such as pneumonia.

To end this introspective discourse, I would like to say that I wonder how it must feel to be that doctor who fixed my child’s back. How does it feel to have a person’s muscle and twisted/bent spine in your hands and to sculpt it into a straight line made of steel; to be the one who uncrushes/uncollapses organs, to have within your hands the spinal column- the encasement of the brain’s outreaching magnificence; are they in awe every single time? Well, I am. I am in awe that science and a man’s determination to become an orthopedic surgeon some 20+ years ago all came together and gave my daughter her second back of steel.


This entry was posted in bone deformity in Rett syndrome, kyphosis, Pain in Rett syndrome, Radiology in Rett syndrome, Rett syndrome Awareness, scoliosis, skeleton, Trail to a Texas Trial, Trofinetide and tagged , , , , . Bookmark the permalink.

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