Session Twenty-One: Making the Crooked Places Straight, Part Two

Session Twenty-One: Making the Crooked Places Straight, Part Two

Following her recovery from cervical spine surgery, our daughter had another sedated MRI to ensure the success of correcting her narrowed cervical canal (stenosis) and its resulting nerve compression. While under sedation, radiology would also capture scans of the lumbar and thoracic spine in preparation for an upcoming visit to an orthopedic surgeon who specializes in skeletal dysplasia (dwarfism).

We had been tracking our daughter’s worsening spinal condition for a couple of years. With her milestone of walking, the curvature had increased drastically, and intervention was necessary. It was decided that it was in our daughter’s best interest to Travel with our Trachie to a hospital on the East coast with a stellar reputation in the skeletal dysplasia community. We had been familiar with the hospital and its specialists for quite some time and always assumed that our journey would take us there eventually. Many of the individuals in the Campomelic Dysplasia family had seen this particular doctor to treat various bone abnormalities.

We discovered that severe scoliosis is defined as a curvature of greater than 40°. The scans revealed that our daughter’s scoliosis curve was 65°. Yikes! At the end of the summer prior to the start of kindergarten, we were set to travel 1100-miles roundtrip to Nemours Hospital in Wilmington, DE. While there, we would meet with Pulmonary, Orthopedics, and the genetics doctor who first diagnosed our daughter just before her first birthday. (He used to travel to the skeletal dysplasia clinic in Ohio a few times a year to meet with patients.)

It was such peace of mind knowing that our girl was in good hands. We have always said from the beginning that we would travel anywhere to put our daughter in front of the best doctors. That time had come!

As we walked up to the hospital our hearts soared to see so many medically-complex children. At our local Children's hospital, it always felt like our daughter stood out. We rarely saw other kids with tracheostomies or requiring ventilators, even in the pulmonary clinic. We just knew we were in the right place. As soon as we set foot in the lobby, I could feel my spirit let out a huge exhale. I felt peace.

While in the genetics clinic, they took extensive measurements of our girl. We discovered that her length (while lying down) was 88cm, but her height (while standing) was only 81 cm, which meant that she was losing quite a bit of height due to her crooked spine. We were certainly ready to get her straightened out!

However, we were not looking forward to the scoliosis treatment. The plan was for our daughter to be put in a plaster cast that started at her hip bones and went up to her armpits, with a cutout around her belly. Every three months, she would have the cast removed and another cast placed under sedation.

Our hearts were broken when the surgeon informed us that our daughter would require this type of intervention throughout her growing years until titanium growing rods would be anchored to her spine. She was just about to turn six years old and now we were being told that she could be in a cast or brace for another six years! I couldn’t even imagine have a plaster cast covering my entire torso. She was always so warm seeing as she struggles to regulate her body temperature, and now she would be basically wearing a turtle shell across her body! How were we supposed to prepare her for this? What kind of life would this be for her? We were about to find out…

Stay tuned for Part Three on our journey to Making the Crooked Places Straight