After having four daughters, we were thrilled to learn our fifth child was a boy. His pregnancy and birth progressed in a typical manner, and we welcomed him into our family in July of 2007.
As a newborn, Jackson was sensitive to any dairy I would eat and began projectile vomiting. He was evaluated at St. Louis Children's Hospital and diagnosed with reflux. Because he would aspirate if he was laid flat to sleep, we had him sleeping in a semi-upright position in his infant car seat.
Several months later we noticed a flat spot on the left side of his head. In hindsight, I recall him always sleeping with his head to that side. We knew he had positional plagiocephaly, since it was common, but were not terribly concerned and were told it is often self-correcting.
At 10 months enough time had passed with the plagiocephaly and people had commented to us that they noticed something was not quite right about his facial symmetry. Concerned that it was a premature closure of the skull, we took him to our family practitioner to have him evaluated.
Our doctor was not at all concerned about his head, but immediately asked if we could remove his shirt. He stood over him, looking down, and said we needed to call the Scoliosis Clinic at Children's for an evaluation. He diagnosed Jackson with a "pretty severe torsional
deformity" of the spine. We called first thing in the morning and pressed them for an appointment as soon as possible.
That week we were seen at St. Louis Children's Hospital's scoliosis clinic. We went in with such optimism, thinking it was an insignificant thing that he would probably outgrow. Our hours of internet searches had armed us with the statistics and numbers were on our side.
The first step was to take x-rays. As we sat in the exam room, waiting for the results, I saw the images up on the screen in the hallway. I was shocked to see this massive C shape in my son's spine. Our mood changed immediately.
The nurse practitioner came in right away and informed us that he had a 70 degree curve in his spine. She explained what the standard chart was, and that anything over 50 was a surgical curve. As we were informed, Jackson's life would be filled with surgeries, growing rods, and we would come to know his surgeon very well over his lifetime. The Orthotics and Prosthetics department came in and casted him for a brace with plaster gauze. He was to wear that 16 hours a day, and it would hold his spine in place until he could schedule surgery. It seemed inevitable. They ordered an MRI and we went through the first weeks like zombies, getting task after task done and appointments lined up.
We decided to see the best surgeon available to us shortly after diagnosis and scheduled an appointment at St. Louis Shriner's Hospital. In the meantime, we got Jack's MRI results back. They were clean. We were told it was "just scoliosis" - which was the best we could have hoped for. We pressed, asking why they were calling it
congenital if there was no reason for the curve, and they said simply because of his age it was not idiopathic.
We saw the second surgeon shortly thereafter, who said the brace was causing more rib deformity. He said that Jack's bones were too pliable, since he was under 2, and instead of holding the spine in place it was just bending his ribs down further. He was right. The next set of x-rays the curve appeared slightly better, but the ribs were worse. He said he wouldn't perform surgery on him this young and wanted to leave him out of the brace and do a follow-up in six months.
Not wanting to just sit and wait, I scoured the internet for information, and kept coming across the ISOP website - but thought it didn't apply to us because of the "congenital" diagnosis we were given. I posted on a message board and someone recommended we look into the group. I joined the CAST group and we connected with a couple of moms who had been through everything we were facing. I spoke with one on the phone and another via email who explained the early intervention program and where we should go.
As luck would have it, an Early Treatment training seminar was going to take place in Chicago a month from then. We called the physician and spoke with him about Jack, who said it may be too progressive, but that he'd evaluate and see what they could do.
In August, just after Jackson turned one, we headed up to Chicago for the training. Jack was evaluated on a Wednesday morning by Miss Mehta herself. What an honor to meet a woman who had devoted her entire surgical career to this non-surgical method of treatment. The Early Treatment Process literally harnesses the body's own growth energy to help it heal itself. In a room of
several other physicians, we looked at his x-rays and they measured his curve. That day he was diagnosed with a 64 degree right thoracic curve with an RVAD of 45 degrees. He also has lordosis, the flattening or concave curve of the spine, and a rotation (the original torsional deformity our family doctor discovered). Although his numbers looked slightly better than the first x-ray he received, his body looked so much worse. We were told the sooner we could get him treated, the better his outcome would be, and that he would be casted on Friday morning.
The day of the cast, we arrived at the hospital very early. Jackson was the first on the list, and we went through pre-op paperwork and procedures. We saw the physicians and Jackson was sedated. On a proper frame, the doctors manipulated his spine into a better position - addressing both the curve and the rotation. They then applied a cast of plaster gauze, covered by fiberglass (for durability and lightness). Then, they trimmed the cast - opening the entire chest cavity and abdominal area so that his ribs could expand as he grew. They also placed a strategic opening in the back, on the side where Jack's ribs were hollowed. The hope is that as his spine turns back,
the ribs will look symmetrical again from the front and that hollowing will fill back in.
Although his movement was restricted for the first couple of weeks, we are now into a groove and I can already see so much improvement. I am so grateful for the information that we have received from ISOP and the CAST group, and so thankful that this organization exists. Jackson's
curve went down to 38 degrees in his first cast, and I know that we will continue to see improvement. Acting quickly was the best thing that we could have done, and finding a physician who was trained by Dr. Mehta on the proper application of a plaster jacket while a child is in a rapid period of growth was the magic equation we needed.
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