My daughter’s scoliosis prognosis hurts ‘in every fiber of my being’

An orthopedic visit, emotionally draining as always, bears bad news

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by Jackie Babiarz |

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When my oldest, Cammy, turned 1 in 2010, I began taking her to various appointments to find a reason why her skills were regressing. We went to a neurologist, hearing and vision specialists, physical therapists, occupational therapists, and developmental therapists. After nearly a year, a physiatrist recognized her symptoms and confirmed that she had Rett syndrome.

Cammy is now 14, and we continue to go to countless appointments with specialists and clinicians. She’s added pulmonology, gastroenterology, and orthopedics to that list. But of all the appointments I’ve attended with Cammy, the orthopedic ones cause me the most anxiety.

I spiral through every single negative emotion within minutes, at every single visit. As much as I try to prepare myself, nothing can stop these feelings — anxiety, as I said, but also fear, anger, frustration, and sadness. They take over and consume me.

This past visit may have been the most difficult of all.

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The challenges of orthopedic appointments

During a typical orthopedic visit, we first stop at radiology to capture an X-ray of Cammy’s back when she’s in a seated position. Her Rett syndrome won’t let her sit independently, and her hands are constantly clasped together. Her scoliosis, or abnormal curve of the spine, has progressed rapidly because she has low muscle tone and cannot bear weight. The back curve has caused her muscles to shorten in her neck, forcing her head position to tilt and turn aggressively to the left.

I have to help Cammy get an X-ray by wearing a 10-pound apron and squatting to hold her up, given the symptoms noted above. She and I share the same disturbed face. With one hand pushing her against the X-ray wall and the other on her forehead attempting to keep her head straight and her body tall, I sweat and try not to swear in frustration.

Finally, we meet with the doctor. Looking at the images, I see an S instead of a straight line. It’s gut-wrenching. I know that each visit will show a worse curve because nothing stops Rett. Tears running down my face, I listen to the doctor explain how the curve will inevitably affect Cammy’s organs.

Facing a difficult reality

This past appointment, the orthotist was brutally honest as he delivered hard news. He told me that Cammy’s curve is the worst he’s seen in over 30 years of his career. In fact, he said, it’s not possible for it to curve any more.

Spinal surgery isn’t an option, he said, because Cammy’s weight is at “failure to thrive,” meaning she hasn’t grown or developed normally. In fact, there’s a chance that she wouldn’t survive the surgery. Her left lung is affected by the curve, for instance. The only silver lining is that the profound scoliosis doesn’t seem to be causing her any pain.

As much as I’ve tried to prepare myself, knowing this prognosis is our terrible reality, it still hurt in every fiber of my being to hear it. Living with Rett syndrome has taken away so much from my daughter and our family.

The one thing it’s given us, however, is a deep appreciation for every single day we’re together. We’ll keep giving her the best life possible while we can.

Note: Rett Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rett Syndrome News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Rett syndrome.


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