Evan's Story, chapter 16, A Terrible Twist

A Terrible Twist

…know thou, my son, that all these things shall give thee experience, and shall be for thy good.

Doctrine and Covenants 122-7

   Scoliosis is an insidious problem that may afflict a person with spina bifida. This is a curvature of the spine caused by unequal muscle strength between the left and right side of the body. The problem starts out slow and grows progressively worse. Looking at the spine from up to down, the lower part will be twisted one way. Nature insists that the person’s head be level, so the upper part of the spine may twist the other way. The total curvature can exceed 90 degrees. Three courses of action are taken to address this problem. A back brace, tethered cord surgery, and a spinal fusion.

   By four years old, Evan was developing scoliosis. The first course of action for scoliosis is a back brace. This is a tight fitting vest of hard plastic. It is meant to keep the spine from twisting any further. Evan had to wear it throughout the day and night. As he grew larger, he was fitted with new braces. We constantly monitored for sores under the brace. There were some days he couldn’t wear it. It really wasn’t designed to be a torture device, but it was. Evan hated it.

   If the scoliosis worsens, a “Tethered Cord” surgery may be performed. As the child grows, the spinal cord may get stuck to scar tissue from the original surgery. Sometimes this condition will cause pain; sometimes it will increase the inequality of the strength of the left side and right side. The fix is a surgery to cut the spinal cord to release the tethering. This was performed twice on Evan.

   It was during his first tethered cord surgery that he was placed in the same room as a girl with a bone cancer in her legs. She was about eleven, and Evan was about eight years old. Prior to the actual surgery, he was walking along on the braces and crutches. He was his bright and cheerful self. This girl had a good, “I’m going to get better” attitude. She really liked Evan. Cindy and I got to know the girl’s parents somewhat. This was at UCLA and the girl was from Las Vegas. Her mother was staying with her, in the hospital room. Much to the mother’s surprise, her husband drove straight from Las Vegas and told her to get some rest at a nearby hotel. After some protests, she did as she was told…and slept for sixteen hours! I suppose it helped to know other parents were dealing with their children’s extreme medical issues. It was heartwarming to see a father and husband so involved. After a five day stay at UCLA, Evan was on his way to a full recovery.

   Two years later, Evan had another tethered cord surgery. Dr. Peacock, the lead neurosurgeon, assured me he had discussed Evan’s case of increasing scoliosis with another renown pediatric neurosurgeon at Primary Children’s Hospital in Salt Lake City. They agreed there were no good choices. This is a fairly simple surgery, but there is a price to be paid by the patient. Cutting the spinal cord increases the level of paralysis. During this hospital stay, Evan was in a room with a six year old boy who had been injured in a car crash. A brother was injured even worse, so the parents were spending more time with the other son, who wasn’t expected to survive. Evan’s hospital room mate spent his time watching television. Again, Evan had a full recovery.

   The third course of action is a spinal fusion. It is the most desperate, complicated, and severe action. In this operation, the vertebrae are fused to a series of stainless steel rods. This operation takes sixteen hours and, if all goes well, requires two weeks hospitalization. Once a spinal fusion is performed, the spine can no longer grow. For this reason, this operation is delayed as long as possible, preferably after the child is at his or her full height.

   Evan’s scoliosis grew progressively worse. As his body was twisted, his lungs were being squished. With reduced lung capacity, Evan could not cough as hard as normal. Because he couldn’t cough up the gunk, minor colds would either linger or progress to bronchitis. Once, a cold turned to a severe case of pneumonia. Evan was hospitalized and chest x-rays were taken. When Dr. Bravo saw the chest x-rays, he was shocked by the extent of the scoliosis. He warned us that something had to be done. 

Scoliosis X-ray, from BJC HOUSTON.COM. 
This is similar to Evan's back x-ray.

   At this time, we were seeing specialists at Lucille Packard Children’s Hospital, at Stanford University. Dr. Rinsky, the pediatric orthopedic surgeon, followed Evan’s worsening condition with utter dismay. The scoliosis was well over 100 degrees. Near the end of 1999, he warned us that Evan would need his spinal fusion the next summer. It would be scheduled for July 13, to avoid missing school. Evan would be just shy of turning thirteen.  Evan wouldn’t be Dr. Rinsky’s youngest spinal fusion patient, but he would be his smallest. Cindy and I knew we only had two choices. The first choice was to watch Evan grow progressively worse. The second choice was to approve this grueling operation. It was an agonizing choice.

   After we made the decision, the agony didn’t leave us. For months, we lived with the knowledge that Evan was going to have an agonizing experience. To put it bluntly, I was a long term emotional basket case. I am sorry to say, during the first half of 2000, I had very little patience with anybody. Evan, on the other hand, was looking forward to his “rod” surgery. Evan was eager to throw away his abominable back brace forever.

To be continued...