Jessie M. | Scoliosis Patient

My son Jessie is the youngest of my three children and was diagnosed with a slight case of scoliosis at birth. We were followed by Dr. Jay Nogi at Children’s Hospital in Richmond, Virginia since Jessie’s diagnosis. At the age of three, Jessie had progressed to an 85-degree curvature and had a rare crank shaft rotation. Dr. Nogi decided to try to stop the curve from worsening so he proceeded to fuse his spine and put Jessie in the circular bed in halo traction. Dr. Nogi opted not to put rods in at this time because it would stunt Jessie’s growth. He hung in traction for almost three months at Children’s Hospital then went home in a body cast in which he remained for another three months. These procedures were followed up by a body brace he wore for several years. Jessie was Dr. Nogi’s poster child. He played soccer, baseball, and participated in karate from the age of 5 on. However, the treatment was not over.

Jessie’s doctor had talked about putting rods in Jessie when he finished his growth spurt closer to the age of 16 or 18. It became apparent at the age of 10 that Dr. Nogi’s first attempt at treatment was unsuccessful. Although he had hoped that the first surgery would keep him stable until he was finished growing, Jessie’s spine began curving at a fast pace. He was losing lung capacity quickly and his upper body was collapsing downward, crushing his heart and lungs.

We took Jessie to the Shriners hospital in Pennsylvania to meet with Dr. Betz for a second opinion. He agreed with the path Dr. Nogi was taking so we opted for a third opinion at Kluge Hospital in Charlottesville, Virginia. He disagreed, saying that Dr. Nogi’s path was too dangerous and he would fuse his spine and leave him with the deformity.

Closer to Jessie’s seventeenth birthday, we returned to Dr. Nogi’s office to be informed that he had suffered a massive heart attack and Dr. Sharpes would be taking over Jessie’s case. We were devastated. At first glance, Dr. Sharpes said he had never seen such a severe case and he felt that with the rate his spine was progressing he had less than a year to live. As a mother, I had a very uneasy feeling and decided this was not the doctor for my son.

My oldest daughter Carla is a nurse and was at home watching the learning channel featuring a show about a child who was having surgery for scoliosis by Dr. Richard McCarthy at Children’s Hospital in Little Rock, Arkansas. She called this Doctor and explained Jessie’s situation. Unfortunately, she was told that Dr. McCarthy had a two-year waiting list. However, Carla was not discouraged; she was persistent in emailing pictures and medical reports trying to get help for her brother. Two days later, I received a call from Dr. McCarthy’s office asking how soon we could get to Little Rock. The next day we were on our way to Arkansas.

Dr. McCarthy was wonderful. He said he had never seen a case so severe. After a full day of X-Rays, PFT’s, and lots of testing, Dr. McCarthy said he would need some time to review the information and results and let me know his course of treatment. My last words to him were “put yourself in my shoes, what would you do if Jessie was your child????

A week later, Dr. McCarthy called and informed me that he had thought long and hard about this decision. His final opinion was that if Jessie was his child, then he would want Dr. Lawrence Lenke to operate on him. I fully trusted Dr. McCarthy’s opinion. He told me he would arrange for us to meet with Dr. Lenke and three weeks later, we made the trip to St. Louis. His faith and respect for Dr. Lenke was well placed. He was very upfront with us about Jessie’s condition agreeing that he was deteriorating at a fast pace and predicted less than a year left for him. Dr. Lenke’s concern was Jessie’s lung capacity and finding someone who would agree to administer his anesthesia.

We checked in Shriners Hospital on October 1, 2006 and Jessie was put in the halo traction again. This time, however, he was free to walk, shower, and was not confined to the circular bed. Jessie was also put through an intense program to strengthen his lungs for surgery. The surgery date was set for December 16th at Barnes Hospital.

I took a leave of absence from my job at a doctor’s office in Virginia to be with Jessie. The people at Shriners were wonderful, caring and supportive. We spent my birthday, Halloween, Thanksgiving, Christmas and New Years in the hospital.

Finally the big day arrived, and believe me, all of us were ready. We left Shriners and checked in to Barnes. After 13 and a half hours of surgery, three days on a ventilator in the intensive care unit, and the best Christmas gift anyone could ask for, a new life was ready and waiting for Jessie. The pictures speak for themselves.

As a child, Jessie was a quiet boy, so different from my other children. Kids can be so cruel and I can remember so many stories about the way they teased him. Once while we were at the pool he asked if it was okay for him to lie just one time. Instead of telling the other children he had a birth defect, he told them his back looked that way because he was attacked by an alligator. It’s amazing how they accepted him and thought that story was cool but were less compassionate about the truth. He was suspended in junior high after fighting with a boy who put a Quasimodo figure on his desk and repeatedly called him a hunchback. Things have certainly changed for him now.

I want to thank Kathy for all her support and answers to my crazy questions. She handled us with complete care and concern. I often tease Kathy about what Dr. Lenke has done to my son. The first thing he did as soon as he was feeling better was move out with a roommate and is now living the adolescent life. He got a Mohawk, is driving his own car, and I even caught him giving a girl his phone number in my office. Jessie is happier and has so much more confidence.

Dr. Lenke—I could never thank you enough for all you have done for my child. You saved his life and I am forever grateful to you and your staff.