Everyone thinks that their baby is beautiful and perfect from the first time they gaze into their eyes, and we were no exception. Hunter was born on September 7, 2012, via emergency c-section. High blood pressure on my behalf, coupled with him experiencing stress during contractions, led the doctor to make that decision. Though the cord was wrapped around his neck prior to delivery, our handsome little man was alert and wide-eyed as his daddy introduced him to the world weighing in at 5 lbs. 11 oz. He was 5 lbs. 4 oz. when we brought him home and throughout most of his first year, he struggled to gain weight. Hunter had reflux and colic beginning a few weeks after we brought him home from the hospital. The colic passed at about 4 ½ months and we hoped that it would be smooth sailing after that.
Hunter quickly developed his own unique personality and people continue to be enamored with his charismatic smile and contagious laugh. He met all of his developmental milestones at appropriate times, but despised being on his tummy until he was able to crawl. He always tilted his head to the right, which looked cute in pictures, but unbeknownst to us, was a warning sign.
As a sports enthusiast and former coach, my husband and I often find ourselves blissfully engrossed in the lore and competitive nature of an athletic flick. There is generally a challenge that unfolds within the film, a few details that pull at your heartstrings, and a triumphantly motivational ending. Regardless of our love of sports, that type of storyline embodies how I’ve always felt our life story should unfold.
The premise of “Trouble with the Curve”, just as is the baseball movie, is to be able to deal with whatever life throws at you. As momma to our beautifully curious little boy, Hunter, we are always experiencing adventure in our little part of the world. What my husband and I didn’t know, is that we would literally experience our “Trouble with the Curve” so soon, as Hunter was recently diagnosed with progressive infantile scoliosis and a tethered spinal cord at the age of 13 months.
At about 9 months of age, I started noticing that one side of Hunter’s back looked like the musculature was built up or stronger on the right side than the left. I asked my sister, who is our resident pediatric occupational therapist, and she gave me a few things to implement and suggested that we continue to watch him and then refer to our pediatrician. At his one year appointment, our pediatrician didn’t say that anything was out of the ordinary, so I pointed the curvature out to him. He immediately asked me to take Hunter upstairs to get an x-ray. He called me later that afternoon and said that he hadn’t seen a child this young with scoliosis and referred me to an orthopedic. Then began the whirlwind. We met with an orthopedic soon thereafter, and were immediately told, without a complete examination mind you, that Hunter would never be able to play sports or do anything active. We were overwhelmed, upset, confused, frustrated, and angry to say the least. First of all, don’t decide our child’s fate without a thorough examination or even knowing his fighting personality. Never mind the fact that if you look up the word “active” in the dictionary, that I’m pretty sure his picture is next to the definition. The ortho ordered an MRI and said he wanted to sit, wait, and watch for 3 months to see how much the curve progressed. We were scheduled to reconvene at the beginning of January. I’m not an orthopedic, but I would think if you know it’s progressing, you wouldn’t wait to see how much it is progressing. That was of course, before I know what I know now. If you have a feeling in your heart and your gut, then listen.We completed the MRI about a week later, which in and of itself was a hard experience having your little undergo anesthesia for the first time. Little did I know that would be one of many times that he would undergo anesthesia. Thank God that our brother-in-lawis an anesthesiologist and was able to explain everything to me prior to and after the MRI. He has a gift for calming nerves and easing anxiety by logical explanation. So, when they walked me back in the MRI room and they explained that Hunter may act like he’s suffocating and his eyes might roll back in his head, I was able to shake my head with confidence that I understood that it would be okay. He was right, it was probably harder on this Momma that it was on our little man. The MRI revealed that his spinal cord was tethered and that he had several syrinx or cysts within the spinal cord. We were told that the syrinx were fairly common, but the tethered cord would have to be dealt with. Normally, the spinal cord hangs loose and is able to move freely with growth, but his was pulled taut. I believe that the spinal cord of most individuals extends to end between the L1/L2 vertebrae and Hunter’s extended to the L4 vertebrae, so it was pulled abnormally low. We were then referred to a neurosurgeon, whose first available appointment was about six weeks after his MRI.
Sit and wait, sit and wait. I’ve decided, waiting is for the birds! Needless to say, Mama Bear came out and frantically started researching and looking for answers. In searching, my mom and I both came across a website for the Infantile Scoliosis Outreach Program (ISOP) and I found myself engrossed in all of the personal stories on their website. I reached out and called ISOP hoping that they could help me find some answers. That was the best phone call that I have made throughout this journey. Heather Montoya, the founder of ISOP, patiently listened and solidified my fear that waiting was NOT the answer. She asked for Hunter’s information, x-rays, and a picture of our baby. She then took our info and spoke with the chief of staff at Texas Scottish Rite Hospital, because they are the best fit for this condition in the state of Texas. Shortly thereafter, Heather worked her magic and we received a call from Scottish Rite. We were told that Hunter needed to address the tethered cord issue before he could go through the admittance procedure for Scottish Rite.
This was taken at the end of October 2013 right after his first x-ray. Hunter is actually standing straight or straight for him anyway, while holding onto the coffee table. As you can see, the curve of his spine is very pronounced and has gotten much worse since then.
December 17th came, and we met with the neurosurgeon, whom we adore and would love him to be Hunter’s primary doctor. He has a wonderful bedside manner and great sense of humor. He was very matter of fact and told us that Hunter would have to have surgery sooner, rather than later, to release the tethered cord. My husband, James, jokingly said, “We’re available tomorrow”, to which we were told that the surgery would actually very likely take place before the 1st of the year, especially since there were a lot of cancellations due to sickness. We received a call two days later on December 19th that he was scheduled for surgery on December 23rd and would be in the hospital until December 25th. Sit and wait, sit and wait, sprint! We were so thankful that the neurosurgeon was proactive and was able to get him in. The surgery was stressful for Momma and Daddy, but very successful for Hunter. We stayed in the hospital from December 23rd through about noon on Christmas Day.
I kept in contact with the nurse from Scottish Rite and as soon as Hunter was released after surgery we started moving forward with the paperwork for Scottish Rite. We were accepted into the Scottish Rite program and were assigned a consultation date of February 19th. We still had our appointment with our orthopedic in Houston at the beginning of January, so James and I discussed and decided to keep the appointment to see what he had to say. I’m an educator and coach at heart and am married to an engineer, so it’s our nature to research and prepare. By this juncture, I had joined a Facebook group for parents of early onset scoliosis and Mehta casting, and was completely engrossed in every aspect of this new found road that we were traveling. James and I went to our orthopedic appointment at the beginning of January armed with knowledge and I was ready to strike. I knew in my gut that we weren’t supposed to be treated there, but felt as though I should peruse every inch to make certain we were on the right path for Hunter. I walked into the office with skepticism and left fuming. James asked if I wanted to be mad at him, but the truth is that I just wanted to be mad. Mad at the fact that, while I’m not a doctor/orthopedic, I know that our orthopedic hadn’t done his homework. It is black and white to me. You can’t profess and implement a the Mehta philosophy and not believe in it and all of its parts. As a parent to a little man that can’t yet speak for himself, I have to question and challenge, and honestly he didn’t meet the grade. In parent/coach conferences, I used to always reassure every athlete’s parents that they were their child’s greatest advocate. That sentiment has never hit home more to me than it does now. Luckily Scottish Rite was in the horizon and we are now onto bigger and better things. The lesson, advocate for your children and what you believe in. Don’t settle for what someone tells you, research and learn the answer for yourself and challenge what you feel isn’t right. Most importantly fight and listen to your heart.
In preparing for a competition or an upcoming challenge, it is imperative that you have a game plan. That game plan may change depending on the opponent or scenario, but ultimately it’s reflective of your personnel and philosophy.
With Progressive Infantile Scoliosis, the game plan is to seek treatment as soon as possible and preferably before the age of 2. With little nuggets like Hunter, they are growing at a rapid rate, and therefore the scoliosis can rapidly progress without treatment. The sooner you treat it, the better the chances of success. Without treatment, it can lead to a lifetime of problems with deformation of the ribs, reduced lung capacity, etc.
You’ve met the personnel, our little man, Hunter, with a fighting heart. Now for the philosophy to beat this condition. PIS is a treatable scenario, but as I said before, it is very time sensitive. The ortho that we met in Houston was all about “wait and see”. His philosophy was that you perform treatment as more of a holding pattern and precursor to surgery in the early teen years. I don’t know about you, but I would rather come out fighting and try to score first, rather than sit back on defense.
Through research, and information sent to me by Heather Hyatt-Montoya, I learned of the studies of Dr. Min Mehta and her method of casting little ones with infantile scoliosis. Her mindset and philosophy was that with the cast, a child can have a gentle form of correction to guide or retrain the growth of the spine. Dr. Mehta personally trained the doctors at Scottish Rite. They adhere the Mehta torso casts in succession for a period of time determined by the severity of the curve and progress of the child. Each cast stays on a child for an average of about 8 weeks. Prior to being admitted to Scottish Rite, I had already made up my mind and heart that that was where we were supposed to be. We must allow him to be treated in the best environment possible in the most least invasive way,
Our consultation appointment with Scottish Rite was February 19, 2014, the doctor and his team came in and examined Hunter, watched him walk, held him. Hunter, of course, begins flirting with the nurse and then kissing me on the cheek to see what they would do.
We asked a number of questions and the orthopedic said that he would like to have X-rays done and then move forward with casting as soon as possible. He indicated that Hunter will be in a cast for a minimum of 1 1/2 years and he removes and replaces the cast every two months in the same procedure, so he will undergo a lesser amount of anesthesia. Music to my ears!
He said that his schedule was pretty tight but was sure that they could work us in. His nurse piped up that she thought that they had an opening for Friday and that she would check and get back with us. Friday?! What a difference a doctor makes!
Hunter completed the X-ray, was then measured for a scoliosis study, and was squeezed into the schedule for Friday. Praise God for leading us to Scottish Rite and giving the doctors the understanding of the sensitivity of time!
We began preparing as best we could for Friday by buying clothes (he will have to go up a shirt size), diapers (he will have to go down a diaper size), things for the car trip home in case he gets sick, and things to occupy little man as best we can. After our appointment we went to the home of some of our friends so Hunter could rest and stretch his legs.
Prior to making the trip to Scottish Rite, Hunter had had two X-rays with his previous orthopedic. One X-ray was taken at the end of October and one was taken at the beginning of January. The first number that we were given by the initial ortho, I believe, was 37 degrees. We were told in January that the curve had increased 7 degrees from October until January. Generally curves greater than 20 degrees are observed because they likely may resolve on their own. Curves greater than 20 degrees are addressed with some form of treatment.
(Mehta casting, while the most gentle and effective cure, is not common practice for all orthopedics. Reason being, a good number of orthopedic surgeons want to do surgery or use casting/bracing as a holding pattern prior to doing surgery. Remember, difference of philosophy. )
If a curve is greater than 40 degrees, it can be decreased, but may never become completely straight, but many get close. About .1% of children with Progressive Idiopathic Infantile Scoliosis have curves greater than 40 degrees. We knew we were probably in the danger zone. The more that I have read and the more parents that I have talked with whose children have this condition, made me have the realization that Hunter’s X-rays with the first orthopedic were incorrectly done. An accurate X-ray can be done standing or lying down. The protocol is that the arms must be at the side and not pulled above the head. If the arms are above the head then spine would be lengthened and the curve would appear straighter. His arms were pulled above his head in both previous X-rays. That in and of itself makes me want to scream! Again we are on the best path now, but incompetence makes me furious. Parents, please question what your child’s doctor does or doesn’t do for their ultimate well being. You are their voice and I can’t stress that enough.
So, prior to our first X-ray at Scottish Rite, we knew that Hunter’s numbers could very likely be much greater than what we had thought they were. His doctor solidified our fears as he told us that his curve was actually 60 degrees pre-cast. However, he also brought great JOY in the same sentence as he told us that his X-ray in cast showed that with the traction and compression of the cast that his curve was 28 degrees!
Hunter is currently in the first of numerous casts to come. He is scheduled for his next cast on April 18, 2014. Children, especially our nuggets with scoli, are resilient. He has done extraordinarily well in cast and quite honestly, better than we ever anticipated. God has big plans for our little man, I am certain of that. James and I were talking with family recently and all agreed that he has the perfect personality for challenges such as those that he has, and will face. When Hunter was born, James joked about us not receiving an instruction manual before leaving the hospital. We could sure use one about now. The truth is, you have to go with the flow and try to adapt to the curves that life throws you.
-Dana Sitton
