Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.
-- 2 Corinthians 4:16-18
It took a lot to write that--to trust that right now--yet, somehow, I do.
Those of you who visit my blog often may have noticed a longer pause between posts that usual recently. It's because--in the words of my fellow blogger and friend, Lauren--"it's because something 'bad' has happened, and I've been taking time to process it."
Truthfully, this story began 11 months ago ... but at that time I chose not to share it with you until I knew the direction this journey was going to take us. Then on July 28th, I knew more clearly what that would be. Now, I think, I'm ready.
When Jackson went for his 4-month well visit at his pediatrician's office--she told us he had slight torticollis. In short, this means that his head was always leaning slightly to the left side. It is a condition caused by stiffening of the muscles in one side of the neck, and it has a variety of causes. It is a "fairly common" infantile condition, and I have seen it on numerous occasions working in a pediatricians' office. It is usually successfully treated with neck exercises and physical therapy. Old hat. No sweat.
About 4 days later, however, both my mom and Justin (on the same day) pointed out to me that they thought Jackson's back looked and felt crooked. Mom referred to it as "his ribs bulging on one side." So, I telephoned his pediatrician's office (where I worked) and giggled into the receiver (feeling silly) as I made Jackson a doctor's appointment because "sometimes I think his back looks crooked--I feel like I'm going crazy or something--it's probably my imagination."
The pediatrician examined his spine and was shocked that she had not noticed it herself. Jackson's spine was curved to the left, and she felt he needed to see a pediatric orthopedist. I left the office with a referral to Children's Hospital in Washington DC. I made the appointment (which was later cancelled).
Now, for those of you who really know me ... the type-A, information driven, research oriented, go-to-exhaustive-lengths-for-a-cause me ... totally understand that I didn't stop there and patiently wait for his ortho appointment nearly 4 weeks out.
I started googling (and thumbing through old nursing textbooks which contained exactly one sentence about the condition) about Infantile Scoliosis. That is where I came upon a website (www.infantilescoliosis.org) --and a miracle. My miracle was fueled by a seriously ill little girl, a ferociously determined single mother, an incredibly brilliant British doctor, kind-hearted old men in funny hats, and a side of plaster-of-paris.
This information I found on the Infantile Scoliosis Outreach Program (ISOP) website led me to cancel Jackson's appointment at Children's and apply for his acceptance to Shriner's Hospital in Philadelphia, Pennsylvania. Shortly after, I discovered he had been "accepted" at Shriner's due to the rarity of his condition and their expertise in it, and our first appointment was scheduled for October 19, 2010.
Jackson's first set of XRays were taken that day, and it was determined that he did, in fact, have "Infantile Scoliosis." His COBB (curve) was 20 degrees, and his RVAD (slant/twisting of the ribs) was 18 degrees. The "cut off" for treatment is 20 degrees. Therefore, at that time we were in a place of "watch and wait." Jackson's numbers were favorable for self-resolution, and we would return to Shriner's in 3 months for more XRays.
Fastforward. We returned to Shriner's on January 25, 2011 when Jackson was 8 months old. His second set of XRays revealed a COBB of 20 degrees (no progression) and an RVAD of 28 degrees. This means that while his vertebrae did not curve more, there was a larger difference between the position of his right-sided ribs and his left-sided ribs and his spine. The doctor gave us the option of beginning treatment at that time or waiting another 3 months because he was cautiously optimistic that Jackson's scoliosis could still resolve on its own. We decided to wait and see.
(checking out his hospital bracelet in January)
I had an unsettled feeling about this appointment. I think it was mostly because Jackson's back looked so much improved to the naked eye. Justin and I had expected to hear that he was already resolving. I spoke at length to a physician colleague (and very dear friend) of mine--and she suggested seeking a second opinion. She suggested a pediatric orthopedic surgeon at John's Hopkins in Baltimore, Maryland. This fella was amazing--I emailed him personally that night--and the next morning, he personally responded and had his nurse telephone me for an appointment. So, off we trekked to MD for our next follow up and XRays.
Remember my blog post about Justin catching the teenage shoplifters at the Baltimore Aquarium? What I conveniently left out at the time of that post was that the reason we were in Baltimore was for Jackson's scoliosis treatment. Using the XRays from Shriner's, the doctor at Hopkins measured Jackson's COBB at 23 degrees and his RVAD at 21 degrees. This seemed to make more sense to us as his back looked so good to the naked eye. Again, we were told to "watch and wait."
We returned to Hopkins in April (sorry, no photos) and new XRays revealed a COBB of 24 degrees and an "improved" RVAD (no number given). We continued our wait-and-see-plan.
Then, on July 28th, 2011--a little over one week ago--we returned to John's Hopkins for a follow up.
Jackson's XRays showed a COBB of 45 degrees and the RVAD was not given.
He was given a new diagnosis of "Progressive Infantile Scoliosis." Unfortunately, John's Hopkins does not strictly adhere to the "gold standard" treatment for this condition, so we will be returning to Shriner's for Jackson.
There is no gentle way to put this, but up until 6 years ago, this condition was a potentially fatal form of aggressive spinal curvature and rotation affecting 1 in 10,000 babies under the age of 3. The only treatment was the surgical placement of metal growth rods around the spine and surgical lengthening of these rods every 6 months. This was the best case scenario. Other possibilities included lung collapse and heart failure due to compression--ventilator dependency--and death.
That's where that miracle comes into play.
In 2005, a British doctor named Dr. Min Mehta published her decades-long medical study of children with Progressive Infantile Scoliosis and her revolutionary treatment method that was curing them.
In Europe since the late 70's--but in the USA--nothing.
But there was this amazing mom named Heather Hyatt whose daughter, Olivia, had progressive infantile scoliosis that was not being properly treated and would stop at nothing to find a cure for her. Heather made it possible for Dr. Mehta to come to the United States and educate physicians on how to successfully treat these kids--and, get this, I have Heather's cell phone number and talk to her regularly!
A great deal of the doctors that were educated in Dr. Mehta's methods are Shriner's physicians and they continue to follow her principles precisely--which is why we have chosen to return to Shriner's for Jackson's treatment.
Dr. Min Mehta discovered that the best (and often curative) treatment for progressive infantile scoliosis was early treatment through EDF (elongation, derogation, flexion) casting with plaster-of-paris.
Beginning in early September, Jackson will receive his first Mehta Cast. This is a plaster torso cast that will apply gentle (and painless) pressure to his spine and, as he grows naturally, will force his spine to grow out the top and bottom of the cast and straighten itself.
And ... because a picture is worth 1,000 words ...
This is the beginning of a long (and scary) journey for us. Jackson will receive a new cast every 8 weeks in Philadelphia until his COBB is less than 10 degrees (cured!) Each cast will be applied under general anesthesia with a state-of-the-art specialized casting table. Then, every 8 weeks, his old cast will be removed...he will have 24 hours cast-free, then a new cast will be reapplied to further correct the curvature of his spine. This process takes an average of 6-24 months. I'm guessing that based on Jackson's curve, we are looking at 10-12 months in a cast. Following the serial casting, Jackson will wear a plastic brace for awhile to ensure that the correction "holds." Hopefully, by preschool, he will be cast and brace free ... and cured of his scoliosis.
Now that I have given you a full medical history and lesson on a rare form of scoliosis, I have but one request.
Please keep Jackson in your prayers. We have an upcoming MRI, and then we will most likely be proceeding with casting in early September. Please pray for good MRI results, good tolerance of anesthesia, easy adaptation to life with the cast (for baby and parents!), and ever-decreasing numbers for his curve.
I know that the many of you who have met Jackson are probably thinking "what? really?" We are too. He is such a delightful little guy--always laughing and blowing kisses--and incredibly headstrong. May that be a testament to all of us as to how he will continue living his life--with or without a cast.
Thanks for reading.
And, because he probably explains it better than I do, meet our friend, "Cole."