Everyone who meets my son, Jackson, immediately thinks he is quite the charmer! I sincerely believe that is partially due to his innate personality, and partially due to the resilience and character he has developed on his journey with Progressive Infantile Scoliosis (PIS).
Jackson was born on May 5th, 2010, weighing a very average 7lb 6oz. He very quickly became the love of my life and a very happy baby. Other than his reflux, Jackson seemed to be healthy and thriving. When Jax was 4 months old, my husband expressed a concern to me that he thought Jackson’s back looked crooked. I didn’t think much of his comment and assured my husband it was probably because Jackson’s core muscles weren’t yet strong enough to support his weight. The very same day, my mother said to me: “Sometimes when I’m rocking Jackson to sleep, it feels like one side of his back is bulging.” Suddenly, I began to worry that something might be awry with my seemingly perfect little guy.
Being a pediatrics registered nurse myself, I felt ridiculous making that first phone call to Jackson’s pediatrician (where I worked at the time) and asking for an appointment because “Jackson’s spine looks crooked.” In retrospect, it was the most important phone call of Jackson’s life. One glance at Jax, and his doctor immediately referred us to a well-respected children’s hospital for an orthopedic consult. Although, only one week earlier, Jackson had had his 4-month well check up, and his spinal curvature had been completely overlooked. *** An Infantile Scoliosis exam is now part of routine baby well visits at Jackson’s pediatrics office! ***
As soon as we returned home from the pediatrician’s office, I went into research mode and began searching the internet for reliable literature on Infantile Scoliosis. I found very little information. What I did find, presented only “doom and gloom.” I even brought out my pediatric nursing textbook which contained exactly one sentence on the subject: “Scoliosis with an onset before age 3, having a very poor prognosis.” My head was swimming, my heart was pounding, and I felt utterly alone. That’s when I discovered the website for ISOP www.abilityconnectioncolorado.org/newsite/infantilescoliosis and soon connected with Heather on the telephone.
My discovery of ISOP was truly a turning point for me. It gave me valuable resources and the confidence to utilize them. In a matter of days, I cancelled Jackson’s appointment with the local children’s hospital and made an appointment with the Shriner’s Hospital Network. Jackson was first seen in Philly at age 5 months. There, his first x-rays were taken, revealing a COBB of 20 degrees and an RVAD of 18 degrees. Because Jackson’s measurements were truly “borderline,” we were instructed to watch and wait for 3 months. During those 3 months, Jackson had an MRI which was thankfully normal. From age 5 months to 12 months, Jackson’s curve and RVAD (rib vertebral angle degree) stayed mostly stable. We continued to “watch and wait” to determine if my son’s scoliosis was of the progressive nature, or not..
Suddenly, Jackson’s x-ray taken at 14 months old revealed a COBB for 45 degrees. His scoliosis was now clearly progressive, and it was time to take action! Jackson was scheduled for his first Mehta cast at the Shriner’s in September 2011, when he was 16 months old. That first cast was difficult on all of us – probably more so on mom and dad than on Jackson. It took our little man about 2 weeks to re-learn how to sit without support, play on the floor with his toys, and run around. Soon, however, he was back in full swing!
Jackson’s first 5 casts were applied at Shriner’s in Philadelphia. Thankfully, the combined efforts of those 5 casts corrected Jackson’s standing, out-of-cast COBB from 45+ degrees to 18 degrees. After Jackson’s 5th Mehta cast, we made the decision to transfer Jackson’s care to Shriner’s Hospital in Greenville, South Carolina. We wholeheartedly believed in Dr. Min Mehta’s EDF casting methods and the integrity of her work and wished to continue with Mehta casting to treat (and hopefully cure) Jackson’s PIS. Our family just needed to do so in another place where where Dr. Mehtas techniques were being followed to the letter. ie: Jackson was able to benefit from a cast without shoulder straps because the location of his curve was low. A curve above T-8/9 is best addressed by a Mehta cast with shoulder straps.
The Shriner’s Hospital in Greenville, SC is an incredible place! Jackson now looks forward to going for his specialized EDF Mehta Casts. Prior to Jackson’s 8th casting, his standing, out-of-cast COBB measured only 4 degrees! Jackson’s orthopedic surgeon in Greenville is strongly committed to maintaining this correction, so he has continued to cast Jackson in order to train Jackson’s muscles and ligaments to maintain this straight spinal alignment. In March 2013, Jackson had his 9thMehta cast applied. For the first time, we were instructed to return to Shriner’s Greenville WITHOUT REMOVING this 9th cast because there is a possibility it will be used to construct Jackson’s removable brace. Jackson’s doctor is aiming for a 0 degree measurement before graduating Jackson into a brace.
When we returned to Shriners on May 22, 2013, Jackson’s x-rays showed that his spine measured 0 degrees! He was completely straight! Jackson’s doctor opted not to cast Jackson a 10th time, but instead to mold him for his TLSO brace which he received in early June. We continue to be overjoyed and utterly thankful for all those who played a role in CURING our son! “Cure;” what am INCREDIBLE word!
Still, Jackson will continue to proudly lift his shirt and show the world his BRACE! He is so proud to wear his new brace and often proclaims “I love it!” to anyone who asks. It has not hindered his spirit in the slightest.
In his Mehta cast, Jackson: rode a rollercoaster, becamea big brother, took a train ride, petitioned Duck Tape Brand to donate a display to Shriner’s Greenville, hunted for Easter eggs, met The Wiggles, watched a monster truck show, played soccer and baseball, learned to use chopsticks, went trick-or-treating, traveled to DC, went to preschool, and developed wisdom well beyond his years. He is a true hero in my book!
before and after xrays Jackson’s measurements: (standing, out-of-cast)
Prior to Cast #1: COBB 45+, RVAD 30+
Prior to Cast #2: COBB 40, RVAD 26
Prior to Cast #3: no standing, out-of-cast x-rays
Prior to Cast #4: COBB 22, RVAD 22
Prior to Cast #5: no standing, out-of-cast x-rays
Prior to Cast #6: COBB 18, RVAD 4
Prior to Cast #7: no x-rays
Prior to Cast #8: COBB 4, RVAD 0
Prior to Cast #9: no x-rays
Prior to TLSO Brace: COBB 0, RVAD 0
Jennifer (Jackson’s Mom)
Photographer with Favorite Things Photography
“We are the music makers, and we are the dreamers of dreams.”
– Willy Wonka