Bexon’s Story- Short Version
If you have a website, please link back here so people can read the whole story. Thanks.
by Heidi Ferrer
My baby didn’t know it but his spine was trying to kill him. This is the story of how the Internet saved my baby’s life.
Google. His life and spine was saved by Googling.
My child has, to be clear, the most difficult orthopedic condition to treat in children and one of the only potentially fatal conditions in babies other than cancer.
Their spine is like a train out of control, dangerously curving to crush their heart and lungs.
Look, I have to tell you this fast because it may help another baby. It may help your baby. This is important work and kids are falling through the cracks every day. We are going to change that forever. Period.
We didn’t notice a curve in Bex’s spine until he was almost a year old. It looked like basically nothing. We thought we should ask his doctor. She was out on maternity leave. On the “well baby” check-up at just over a year, Bex was sick and the doctor did not remove his t-shirt in the room.
This was Jenny McCarthy’s pediatrician, at least at one point, and also Gabrielle Reece’s. He’s been on Larry King Live. We felt like we were with the best. The Best of the Best, The Best in the West…
The curve looked so slight at this point that we forgot to ask about it, we were much more worried about his high fever. We didn’t know what a monster this condition is.
It’s a monster.
But something happened earlier. Bex has a sacral dimple above his butt. It’s tiny, but it can be an indicator in some, but not all cases of a need to check out the spine, etc. To look for tethered cord, Chiari malformation, etc.
What you also want to look for is a rib hump, or uneven ribs, but I’m getting ahead of myself. (It’s not a muscle build-up on one side.)
Look: We showed his pediatrician his spine a few weeks later and were sent to a celebrity friendly orthopedic surgeon in Santa Monica, CA.
This is where we began to get the dreaded Watch and Wait, the kiss of death with Progressive Infantile Scoliosis.
This guy acted like it was no big deal. Bex was about 13 months old, 25 degrees COBB angle in a lying down X-ray. Sitting or standing is more accurate, that number is usually higher.
Doc moron number one said come back in a month. Bex went from 25 to 28 degrees in that month. At this point he should have suggested casting, but no. Doc moron said come back in 3 months.
Bex was then 34 degrees in a lying down X-ray and only NOW he “kicked us up” to the scoliosis specialist.
Really? The first guy was not the specialist?
This doc moron number 2 who I like to call Doctor My Tummy Tells Me in Beverly Hills who also practices at Children’s Hospital LA.
Dr. My Tummy Tells Me (he said his tummy tells him when to do surgery on a child! I know!) – he ordered an MRI but did not mention or encourage a non-surgical alternative for our innocent, precious baby. When my husband asked about it, he was dismissive. Casts were not done in the state of California, he said. He didn’t do them. You’d have to go out of state.
To Utah! Gasp!
This guy, if we had followed his advice, would’ve ruined my child’s life with his advice. Caused my boy’s body to be deformed, caused him unimaginable physical and emotional pain over his lifetime.
Bex could’ve bee fused at full height by age 7-10 years old, full of metal in his back after multiple invasive surgeries, with permanent decreased lung function.
Now - years later- this second ortho is recommending casting to some patients, but he didn’t with us. And he knew about casting, back then. He knew.
If we had followed his advice, bracing, which does not usually hold progressive cases followed by years of invasive, painful surgeries with multiple complications and deformity and a totally different childhood and future for my precious innocent boy—
If we had followed his advice…
Thank God we didn’t follow his advice, even though we had excellent health insurance and the Best in the West doctors and instead we GOOGLED and found ISOP, a non-profit charity begun by Heather Hyatt Montoya, a Mama Tiger who was looking for a cure to save her own precious baby, beautiful Olivia…
Bex had 10 body/torso casts in the Mehta Method of EDF (Elongation, Derotation, Flexion) casting, which is done on a special three dimensional table that was invented by doctors Cotrel and Morel in France in the 1940s. India born Doctor Min Mehta came up with the pioneering idea of casting babies and young children while they are in the rapid growth phase, as the human spine grows 50 percent before the age of 2.
The rule of thumb for this treatment is to start early, preferably under age 2, (but I can tell you we’ve already gotten great correction over age 3), and it’s best to begin under 50-60 degrees for a complete “cure.”
That said, I know children who started at 80 degrees and are doing amazingly. It is the only cure for this condition, and while the casts seem daunting at first, they are temporary and removable. Once invasive surgeries are begun and hardware is implanted in your child’s body, there is no going back.
We are not anti surgery and would do it if it’s the best possible option at any point. But it should not be the first line of defense with this condition, if caught in time. And over a million dollars per child is the cost of that route, which we all pay for in insurance. Hel-lo, economy!
If your baby or young child has scoliosis, ACT FAST. Time is vital. MRIS have to be done before casting, and in some cities and countries it can take 2 months or longer to get in for those appointments. Get in the system, be politely pushy, get your ducks in a row.
You can always cancel medical appointments, just get them on the books. 80-90 percent of cases of IS self-resolve, but if you are in the progressive group you will want to act fast and you may have a complete cure.
A very beyond special mention for the brilliant Doctor Jacques D’ Astous and Shriners Hospital for Children, who along with ISOP have absolutely changed and saved our boy’s life and spine. Jacques is the guru and he works very, very hard to train other docs worldwide in this treatment.
Shriners Hospitals- why don’t more people know about them? The work they do to save children and transform their lives is simply stunning, it takes your breath away.
So here’s the great news! As I write this, Bex is down from 63 degrees COBB angle (zero being straight) to— believe your eyes:
–Down to 1.21 degrees in his current brace! 0 to 6 degrees in considered straight. He had about one year of all day bracing after cast number 10 and is now in a night time only brace. It’s so easy now, it’s a dream.
He will probably continue night time bracing for another year or more, but he’s brace and cast free during the day at age 5, starting kindergarten! It is a miracle and we are beyond grateful that our baby was saved from the jaws of death and pain and deformity.
And we get to help others.
And life goes on.
And love wins.
Love always wins.
But you knew that, about love.
And now…if you want to read more detail:
Bexon’s Story: (The Beginning, Longer version:)
Note: If you don’t have time to read this 12-13 page essay, you may want to scroll down to the bottom and check out the short videos at the end.)
by Heidi Ferrer
My baby boy didn’t know it, but his spine was trying to kill him. This is the story of how the Internet saved my son’s life. Well, the Internet, a single mother, an 11-year-old girl, a retired female doctor from India, a French-Canadian doctor, and a group of kind men wearing tall, funny hats. How did this strange group of people come together? By a series of miracles.
It all happened fast—so fast, my mind was reeling, grasping to process everything. Upon hearing the news about my child’s condition, my head was dizzy and my knees felt so weak, I nearly passed out. A window had been opened to a terrifying world I never wanted to visit, let alone live in. It was as if my 18-month-old baby boy was lashed to the train tracks in an old-fashioned melodrama, while the train was hurtling toward him. If any of this group of people hadn’t been at the train tracks that day, my baby’s vital organs, his heart and lungs, would’ve been crushed by the oncoming train that was, in fact, his very own spine.
He has progressive infantile scoliosis, a condition that can be fatal before age three. But there they were: the single mom, the 11-year-old girl, the two doctors and the men in the hats. They untied him from the tracks and placed him safely back into my arms.
How do you express your gratitude to someone for saving your baby’s life? There just aren’t enough “thank yous.”
We thought we had good doctors. We thought our baby was safe.
But let me go back a bit, to when I was newly pregnant with my little boy. I don’t care what religion, race, or creed you are, every mother-to-be pretty much has the same moment. The one with God or the universe or whoever you believe in. And that moment is where you acknowledge in the pit of your stomach and your very cells, that, while most babies are born healthy…that yes, you do know that some pregnancies don’t end well. And yes, you do know that some babies and children have health problems. And in that moment you say to God or the universe, “Please don’t let any babies have health problems—ever. And especially not THIS one, please?”
You may have casually or fervently said to God, like I did, “God, let’s talk. I know that I’m resilient. But not for that. God, don’t think I’m too resilient, because I don’t even know how I’m gonna handle being the mother to a healthy child, so please, please, let this one be okay.”
I thought I did everything right. I read all of the pregnancy books I could get my hands on; I ate a lot of salads and organic food. I was over 35 and I chose to get the earliest genetic test possible, one called the CVS test, near the end of the first trimester. It was all good, “perfect scores.” At the end of my pregnancy, there was an unexpected glitch: I developed a condition called preeclampsia, in which very high blood pressure is a symptom. The worst case scenario of this is death to both mother and baby, another possibility is a stroke.
The worst didn’t happen for me because it was caught in time (by me). I swelled up like the Michelin Man seemingly overnight, so I decided to take my own blood pressure on a home cuff. Soon my wedding rings almost had to be sawed off my Italian-sausagelike fingers, and my regular OB-GYN was in China (yes, CHINA) when I needed an emergency C-section, but my baby was born healthy. He was a month premature and only 4 lbs. 13 oz., but he didn’t need to be in an incubator in the NICU.
We named him Bexon Lightning, or Bex Lightning for short, because we just liked the way it sounded. We called him the Milky Monkey and the Gorgeous Chicken. He was tiny and perfect, and his breath smelled like clouds.
Fast forward to a year later. Like most parents, our baby brought us down to Chinatown. My husband Nick and I were exhausted and had been through a roller coaster of joy and being dropped to our very knees by this small, delicious, and fiercely demanding being. Unlike most parents, we had endured the suicide of my father by gunshot only four months after our child’s birth. My dad had been in failing health, but the compounding factor was depression. Our family had loved and nurtured and grieved in the past year, but we were surviving, and each day our baby brought tremendous joy.
Bexon had started to walk at 11 months old, and he was a little wobbly, but that was only natural. When he was around a year old, we noticed his back had just the slightest curve, like he was favoring one side. To the naked eye, it looked like almost nothing, who among us doesn’t have one boob ever so slightly larger than the other or, you know, some other minor physical flaw? We just said to each other we’d bring it up at the 12-month pediatric appointment, no big whoop.
We forgot to even bring it up that day because our son had the highest fever of his life, 102 degrees, the night before, and his regular doctor was out on maternity leave. The head doctor there, a very reputable one, didn’t take off Bexon’s shirt in the visit because he was sick and the room was chilly. Our doctor’s office doesn’t do inoculations when the child is sick, so we said “Oh, we’ll just bring it up when we take him in for the shot when his cough goes away.”
His mild cough didn’t go away for weeks, but that was not so unusual with his immature lungs, as all babies have at that age. It was just at night, so we waited on the shot, to be on the safe side. When he was just over a year, my husband casually swung him by the doctor’s office for the inoculation, and that’s when he showed the doctor the slight curve in his spine. The doctor noticed the curve too, and referred my husband to an orthopedic surgeon who specializes in children, who was able to see our baby that same day.
That’s when Bexon got his first X-ray, which showed that his spine was curving in a “C” shape at 25 degrees (as opposed to zero to six degrees, which is considered straight).
This orthopedic surgeon, I’ll call him Dr. X, said to come back in a month for a follow-up X-ray. No major alarm bells were rung; my husband came home and didn’t even use the word “scoliosis.” At this point it still seemed like it might be nothing to really worry about, and life went on.
But the tracks were trembling. The train was coming for our boy.
One month later Bexon’s spine X-rayed at 28 degrees. Dr. X still didn’t seem alarmed, but he did mention the word scoliosis to me. I asked him what the worst-case scenario would be, and he said spinal surgery, like it was extremely common and not something to fret too much about. He assured us that he knew a great surgeon he would refer us to, a doctor we may never need, as Bexon’s spine could “self-resolve”—just straighten back up on its own. In fact, most cases of infantile scoliosis do straighten on their own, so he wasn’t wrong about that. What he didn’t tell us was that in the 10 percent or so of cases where it doesn’t, it can be fatal.
Oh, just that. Just fatal.
Dr. X said to come back in three months. We went through the holidays with our families a bit concerned but having no real clue that our child’s spine was on a crash course to crush his heart and lungs.
Now, maybe it’s just me, but I would rather have had this information than not. It’s simply not okay for parents to be treated like children and left in the dark when they are the only advocates for an innocent child’s health and survival. Doctor X had assured us that anything under 34 degrees would not even have to be treated. We live in a major metropolitan area, and we currently are lucky enough to have excellent health insurance. Our child, in his young life, has been seen by many chichi doctors, including one who has appeared on Larry King Live, discussing potential causes of autism, as well as others who have many celebrities’ offspring as their patients. We thought we were in hands that could be trusted. We thought our baby was safe.
Between that Christmas and New Year’s holidays, we went to Doctor X for a third X-ray. Our baby’s spine now measured at 34 degrees. He decided to now refer us to an orthopedic surgeon who specializes in bracing and spinal surgeries. I’ll call him Dr. Y.
Now, we were scared but Doctor X had made it seem like surgery was no big deal, and we felt if our baby needed it, we would have to do it. It was, of course, a horrible thought, but it looked like it may be the only option, and we held out hope that it may not be needed.
We met with Doctor Y, who is associated with an excellent children’s hospital, and he referred us to get an MRI done there of our baby’s spine. Now we were in the world of neurosurgeons and very sick children, having our 18-month-old son put under full anesthesia and his spine examined for many possible deformities. We worried, cried, and steeled ourselves, but his spinal MRI was ultimately clear, except for a fluid-filled cyst called a “syrinx.” We researched that online and it was very scary—if it suddenly grew, it could cause permanent nerve damage.
We later found out it may never grow and could just be an “incidental finding,” something we’d never have even known he had if the MRI hadn’t been done. We met with the neurosurgeon, who said he wanted one more MRI, to rule out brain tumors and other things too terrifying to think about. One possibility was that he could have a brain tumor “dripping” tumors down into his spinal column. This world was one I wanted to exit quickly, but we were now, like Alice, down the rabbit hole, lost in a health maze with no clear way out.
While waiting for the second MRI appointment, something had to be done about our son’s scoliosis. We got a call from the very nice assistant to Doctor Y, the second orthopedic surgeon we saw, I’ll call her “Jill.” Jill said the doctor would now probably “want to do something,” that “something” most likely meaning putting our baby in a brace for his back, to be worn 23 hours a day. We politely asked Jill how long the bracing would be, assuming it might be for a few months or, heaven forbid, even a year of his life. Jill politely informed us that it would be “until adolescence.”
That meant a decade or more of rigid bracing, in the hopes of halting his curve, 23 hours a day, followed by spinal fusion surgery. Oh, just that. Our jaws dropped, our brains reeled, and we thanked Jill, hung up the phone, and nearly hit the floor.
Why hadn’t anyone told us before that this was a possibility? Because they didn’t want to alarm us? Well, we were now very, very alarmed.
We went on the Internet, to our dear, beloved family friend Google. Within minutes we found out that bracing does not correct scoliosis. How could this be the first we’d heard of this? We were not told then but later found out that spinal “growth rod” surgery, which our baby would most likely have needed, has a 100% complication rate.
When the “hardware” is installed in the young child’s spine, “expansion procedures” are needed every six months. The “complication rate” can mean things like these “growth rods” breaking inside the child’s body and fusion developing where things are not supposed to be fused. Or…“spinal staples” can become detached and lost inside the child’s body and exploratory surgery must be done to locate them.
When I first found out the truth about my baby’s health, to be honest, I wanted to be checked into a hospital myself and put on a morphine drip. I wanted to be put into a medically induced coma until the worst was over.
Then we found a Web site, www.infantilescoliosis.org, a nonprofit organization, where we discovered that there is an actual, existing cure for our son’s condition—if caught in time. And we found out that while our first orthopedist “watched and waited” as our son’s curve progressed, his time was rapidly running out.
This brings me back to the single mom, the 11-year-old girl, the doctors from India and Canada, and the group of men with the funny hats. How did this odd group of people come together? By the grace of God. Without even one of these heroes, had my son lived, he would’ve likely faced years of surgeries and severe deformity.
Yes, severe deformity. These are not two words you want associated with anyone, let alone your own child. My first thoughts were of the movie The Elephant Man, which I had heard was brilliant but actively avoided seeing. I was afraid it would upset me too much. When I did watch it, it was one of my favorite films I’d ever seen. There’s a moment where a beautiful woman is kind to the lead character, who was a real person named David Merrick, which had never really happened in his life before.
This slayed me emotionally; I felt so happy for him in that moment. When I realized that my baby boy was facing potential severe deformity in his future…there really are no words. How do you process that? It’s almost too much for your brain to handle; it has to go into overload or find a safe place to hide. I’m glad I didn’t splinter off into multiple personalities, although I’m sure I have plenty of them to spare. I wanted to cry out, “HELP!” And I found it, which brings me back to the single mom.
Her name is Heather Hyatt-Montoya. Picture a lovely woman with the chutzpah of Erin Brockovich. Well, I don’t know Ms. Brockovich personally, but I mean the movie version with Julia Roberts, perhaps without the animal print push-up bras. Heather and her daughter Olivia’s story is worth a whole movie, but here is a slim, nutshell version. Heather’s baby girl Olivia had a spinal curve that reached an extremely dangerous 100 degrees before it was treated properly.
Olivia’s spinal curve had first been X-rayed at 39 degrees as a very young baby, but she also needed a procedure for her hip, which was treated by her doctors while her scoliosis curve continued to dangerously progress. After her hip was treated, she was put in a brace for her spine, which failed to stop the progression, as they often don’t in these cases.
Heather did extensive research, searching the globe for a cure for Olivia. After over two years she made contact with a doctor who could help her daughter, but he unfortunately lived in France. Also, he was close to retirement. Heather then made a decision to raise the money to move to France.
There was a doctor at the Shriners Hospital for Children in Salt Lake City with whom she had been corresponding, and he told her that this French doctor, Jean Doubousset, would be in Salt Lake City in June 2000 before he retired, where he would be receiving an award, and he would try to set up an appointment for Olivia. Not long after consulting with Dr. Doubousset, Dr. Jacques D’Astous, the amazing French-Canadian doctor I mentioned earlier, began to treat Olivia at Shriners Hospital in Salt Lake City.
Now, did you know that the Shriners Hospitals, the ones started by that group of men wearing the tall, funny hats, are absolutely free of charge? What they do for children astounds me, it just breaks my heart wide open, my heart cracks open like an egg and leaks gratitude all over the floor. The families are never charged one penny for treatment there, not for a state-of-the-art prosthetic limb and not for a “ten thousand dollar Q-tip.” They are able to give the children the care they deserve because they are not governed by privatized health insurance companies. The staff and doctors there are angels to children in need, and the Shriners are absolute saints for doing this.
Heather, being the force of nature that she is, started the infantile scoliosis Web site, and later, through the Scoliosis Association in the United Kingdom, (S.A.U.K.), she met Dr. Min Mehta, the brilliant female India-born doctor I mentioned earlier. Dr. Mehta had already straightened over a hundred infants and young children using a series of corrective plaster casts. The key, she found, was early intervention, before the curve becomes permanent and dangerous. Dr. Mehta has followed her patient’s progress for over a decade and they remain straight.
Dr. Mehta is now retired from practicing in England and travels to teach others, as she herself suffers from scoliosis and has dedicated her life to finding a cure. The Mehta Method/EDF (elongation, derotation, flexion) casts are a gentle, nonsurgical treatment that redirect the spine along with the child’s own period of rapid growth, like the redirection of a growing vine up a wall. The human spine grows 50 percent in the first two years of life, so that is the best, most crucial window in which to harness it in these cases.
I’ve been to Napa Valley, where we learned visiting the vineyards that the best quality wine grows through rocky soil. The kind that grows through simple soil has no depth of character. I thought, Oh! Just like people!
Within 24 hours of finding out the truth about my son’s condition via the Internet, my husband Nick and I were on the phone with Heather Montoya, getting vital advice, and within days we were accepted to Shriners, with Bexon’s first appointment set for March 30th. It was late January then, and our appointment for Bexon’s second MRI was not until April 1st. We still didn’t fully grasp how fast the train was coming for our son, but we were passionate and “politely pushy,” and the second MRI date was moved up into a cancellation slot.
The second MRI was all clear; the syrinx and the scoliosis were still there, but there were “no new findings.” Whew. It was extremely lucky that the second MRI was moved up, because we got a call that we could miraculously be moved in a cancellation appointment at Shriners.
I say “miraculously” because while Bexon’s curve measured at 34 degrees in an X-ray on December 29th, it measured at 61 degrees just six weeks later, the day his first life-saving EDF cast was applied. As soon as the cast was on, his curve was down to 38 degrees “in cast.” Had his appointments not been moved up, he could easily have sustained lung damage for life. The window of opportunity could have closed for my little boy.
Olivia’s doctor at Shriners Hospital, Jacques D’Astous, is now also my son’s doctor, and he was the first doctor in the U.S. to be willing to treat children early with these life-saving casts in Dr. Mehta’s Early Treatment Method. There are pretty much only two things kids can’t do when they’re wearing the cast. They can’t play in sand, because if it went down inside the cast it would irritate their skin (and we all know sand gets EVERYWHERE), and they can’t be submerged in water.
Yeah, it’s a little bit of a bummer that you can only do a full bath with your baby between cast changes every few months, but if it’s between that and my child having working vital organs, it’s not much of a toss-up. Sponge baths and hair washing is fine for a while; I’m sure he’ll love to surf when he grows up. I’m sure he’ll also jump off mountains without a parachute, but I’ll worry about that later.
The Infantile Scoliosis Outreach Program (ISOP) was established in 2003 in Denver, Colorado, and now, I can’t imagine living without the Internet, but 10 years ago that just wasn’t the case. If my baby had been born even just 5 years earlier, I shudder to think where we’d be right now. Probably standing over the train tracks, stunned senseless that we had to watch and wait helplessly as the train kept coming for our son.
I would’ve laid down beside him, held him tightly, and closed my eyes.
Shriners Hospitals began in 1922, and since then more than 835,000 children have been treated at 22 locations. Two of the first patients were a little girl with a clubfoot and a little boy stricken with polio. On our first visit to Shriners in Salt Lake City, we encountered a little girl with her clubfoot being treated in a cast, smiling as she walked down the hall. These charitable hospitals are on the cutting edge of orthopedics and burn care for children, and they’ve been doing this for these innocents since 1922. Can I say again—saints.
Bexon is 22 months old as I write this, and if you’re a female of any age or ethnicity, he’d be flirting with you right now. You’d probably be flirting back at him, although I’m not saying you’re easy or anything. The women in the store checkout lines always coo at him, “When are you comin’ back to see me?”
The boy can’t help it; it’s his destiny and probably (sigh!) my own personal cross to bear. He has wavy, honey-blond hair and big, brown eyes with long, dark lashes, not unlike a boy Bambi, and he has a big thing for leaves. Leaves are just it, man—they’re much cooler than stuffed animals or anything electronic. He already knows that each one is unique. They’re organic matter, just like him.
He also runs—fast. People watch him and shake their heads, saying things like, “No one can catch that baby.” It’s true. We just got lucky when we gave him the middle name Lightning because he runs like the wind, or maybe, as my Irish friend Britt says, “Angels whispered his name” into our ears, we had nothing to do with it.
You know, I never wanted to be a part of any support group of any kind. If you need that, your life must’ve really taken a wrong turn, that was my way of thinking. There’s a beautifully written piece by a mother who had a child with challenges, called A Trip to Holland. The author is Emily Perl Kingsley, and she describes what it’s like to have a child with a disability, using the analogy that you think you’re going to Italy, you’ve bought the ticket to Italy like everyone else, but you instead find yourself in Holland.
I love this piece. It’s so beautiful, it makes me cry, but I just never wanted to go to Holland. I’m all for chasing windmills, but I wanted to go to Italy. I DID go to Italy, I thought to myself, I had a healthy baby—what is up with this detour into Holland? Give me Paris in the springtime, I don’t care if Holland has Rembrants and excellent cheese.
Oh, if I really break it down, I probably qualify to be a part of about five hundred support groups. Everything from “people whose legs feel itchy when they’re anxious” to “those with an abnormal attraction to fried chicken fingers with ranch dressing.”
I think on some level I felt sorry for my baby that I was not a better mother when “the shit,” as they so eloquently say, hit the proverbial fan. I just felt like I couldn’t handle it. Not to be too precious, but I often wanted to vomit; I had nausea on and off for weeks. This is where the Yahoo medical support group called C.A.S.T. (Casts as an Alternative for Scoliosis Treatment) came into our lives, which was also started by Heather, the ISOP’s “Founding Mother.” Another mother wrote to me in an e-mail on this site that upon hearing the news about her own baby girl, she just wanted to “crawl into a hole.” Yes, I soooo relate.
It turns out that both she and I did a pretty good job advocating for our child’s health, so here’s to wanting to fall apart! Just because you feel fragile doesn’t mean you can’t be resilient. This mom’s little girl was diagnosed after my baby, and I gave her whatever feeble advice I had, and her baby is currently in her first cast and thriving.
On this e-mail support group, we communicate with parents in the U.S., India, the U.K., and all over the world, who are often scared and desperately searching for help. In Australia there were zero doctors applying this early EDF casting treatment until one family from Perth took out a forty thousand dollar line of credit to buy the proper table—a three-dimensional versus two-dimensional (flat)—system, that allows the casting to be done to maximum benefit.
Once the family purchased the table at their own expense, they donated it to their nearest Children’s Hospital in Sydney to help other children. In many ways it was already too late for their little boy, Nathan Garcia, who, at five years old, still had the body of a two-year-old. Because Nathan wasn’t treated early enough, his curve had stunted his full growth and started crushing his lungs and weak heart.
Nathan was born with hypoplastic left heart syndrome, a condition that is referred to as “half a heart,” and his scoliosis not being treated in time has caused him to go into respiratory failure. He is currently undergoing halo gravity traction, with bolts in his small skull, and as I write this, he is scheduled to undergo a spinal “hardware” operation. Yes, the one with the 100 percent complication rate.
An orthopedic surgeon treating Nathan was quoted regarding these casts, saying, “We’re seeing this treatment validated, and it’s only taken 40 years, but medicine’s a pretty conservative group at times.”
Heather’s quest to help others has not saved her own little girl, now 11 years old, from multiple invasive treatments, lung problems, and surgeries. By the time she moved heaven and earth for her child and found out about casting, it was already too late. What boggles the mind is that young Olivia’s condition directly helped saved my own baby’s life. Olivia recently won the role of President Lincoln in her fifth-grade play; she was unanimously voted for by the other students. I just love the image of beautiful Olivia’s face, light emanating from it, wearing that long beard. Olivia rocks.
At the first moment of finding out the news about my child’s health, I wanted to crawl into a hole, but now I want to stand and shout from the rooftops. Thousands of other young children in the U.S. and in countries all around the world right now are lashed to the same train tracks of progressive infantile scoliosis that my child was, and no one is seeing the signs that DANGEROUS CURVES ARE AHEAD. Their parents may not even know that the train is coming. The cure is something that a lot of us played with as kids, and it costs almost nothing: plaster.
And guess what, insurance companies? Spinal surgery is expensive! So are scoliosis braces, I’ve heard they cost around three to six thousand dollars each (as of now), for potentially a decade or longer.
For those people who need braces and surgery, they are absolutely necessary, but how about a cure for some young children that’s made of simple plaster? That would peel some money off the insurance companies’ bottom line. It would be in everybody’s best interest. Why wouldn’t the least expensive, best thing be the standard of care for these babies in trouble? You have to ask yourself, who benefits from years of bracing and surgery? As they say, “If you want the answer, just follow the money.”
But thank goodness not everybody’s bottom line is money. Some people, many people, want their lives to have meaning. They want to soothe and lift someone from the side of the road, breathing life and sustaining love into these precious human beings. It’s going to take those people and more doctors who are willing to be trained to do the casting in Dr. Mehta’s method, and I believe there are many out there who are willing to do it. Anybody with half a heart.
I’ve recently heard that the Shriners have been weighing closing some of their hospitals due to diminishing funds. I pray this isn’t true. These hospitals cannot become extinct—they must survive to keep saving these children and transforming their lives.
So many people with diseases are desperately searching for a cure. There is already a known cure for what could’ve killed my baby, the word just needs to get out there to save others in time.
I just pray that we can all help untie these innocent children from the tracks they’re on and let them grow, like Bexon has the chance to now. Let them grow and let them run—fast.
As fast as Lightning.
Here is the PSA for ISOP (The X-ray is Bexon’s spine before treatment, he is the boy smiling at the end)
This is Bex at age 19 months, less than 24 hours after his first cast was applied:
This is the non-profit website link to learn more: www.infantilescoliosis.org