I first heard about Heidi and her son, Bexon, through a mutual friend–Breezy Mama Lane. She was telling me about Bex, who was born with severe infantile scoliosis and his parents were told that in order to correct it, he would have to have major surgeries with a 100% complication rate and potential deformities. Heidi knew there had to be a better alternative and her determination is an inspiration.
The Internet saved my son’s life. His spine was on a collision course to crush his small heart and lungs, and it could’ve happened before age three.
When he began walking, we noticed the slightest curve in his spine. Hmmm, we thought, we should get this checked? Our pediatrician sent us to an orthopedic surgeon, where an X-ray showed Bex’s little spine was curving in a “C” shape at 25 degrees, zero being straight. He said not to worry, come back in a month. The second visit he was at 28 degrees, and the word scoliosis was mentioned. I said “I know what scoliosis is, I read the Judy Blume book “Deenie”, you have to wear a brace, right?”
The doctor said it may self-resolve. In fact, 90 percent of cases of infantile scoliosis do resolve on their own, but what he didn’t mention was that in the other ten percent it can be fatal. Oh, just that. Just fatal.
He said to come back in three months. Bexon’s curve then measured at 34 degrees. Now, the doctor sent us to another orthopedist, one who specializes in bracing and surgeries. We were worried, but he made it sound like surgery was no big whoop.
The second orthopedist said we needed an MRI. We were sent to a neurosurgeon who ordered two MRIs, both with full anesthesia, on our eighteen month old baby boy. The MRI’s ruled out some very scary things, but his scoliosis was determined to be “idiopathic”, meaning no known cause.
We got a call from the orthopedist’s assistant, saying that the doctor would probably “want to do something” now. I asked what did she think he would do — bracing for few months? She informed us that the rigid bracing, worn 23 hours a day, would be for a decade or longer, until adolescence, followed by spinal fusion surgery.
We hung up the phone and our jaws hit the floor. Why had no one bothered to mention this before? Because they didn’t want to alarm us?
We Googled progressive infantile scoliosis and found the web site for ISOP, www.infantilescoliosis.org. The Infantile Scoliosis Outreach Program is a non-profit, started by a force-of-nature single mom in Colorado, Heather Hyatt-Montoya. She searched the globe for help for her daughter Olivia, and ultimately found there was a CURE for this condition, if caught in time.
She found the treatment in the U.K., where a brilliant female doctor from India, Dr. Min Mehta, had cured many children with gentle, non-surgical plaster casts. The casts harness the own child’s natural growth, like the redirection of a growing vine up a wall. As the human spine grows fifty percent in the first two years, that is the crucial window.
Heather helped bring Mehta casting method to the U.S., although it was too late for Heather’s own daughter, Olivia, to benefit from it. Olivia has bravely endured many invasive surgeries, surgeries my own child will not have to endure because of what her incredible mom and Dr. Mehta have done for us.
Bexon was first “cast” at Shriners Hospital in Salt Lake City, by the amazing Dr. Jacques D’Astous. Now, did you know that Shriners is entirely free of charge? They are truly saints to children in need, and have been since 1922. We have excellent insurance, but shockingly, doctors who practice at the top hospitals in L.A. — the “Best of the West” — gave us dangerous advice, to “watch and wait,” and try bracing, which doesn’t correct scoliosis and doesn’t even hold the curve, in progressive cases. A little boy in the hospital room next to us reached 105 degrees, because this advice is the norm in the medical community. When these casts can save a child, to me, that’s criminal.
Six weeks after measuring 34 degrees, Bexon was 61 degrees on his first casting day! Had we waited just two months longer, our boy could’ve easily faced permanent lung damage, years of surgeries, pain and deformity. He will now be CURED right around the time he enters preschool.
How do you thank someone for saving your child’s life? There are no words. These people are true heroes.
Breezy Mamas, Infantile Scoliosis should be on the “well baby” checklist!
About Heidi Ferrer: Heidi Ferrer is a professional screen and TV writer. Her first screenplay sale was in 1997 to 20th Century Fox Studios. Since then, she has sold and optioned numerous original screenplays, as well as having been hired to rewrite other feature projects for studios including Disney, Warner Bros., MGM, and New Line Cinema. She lives in Los Angeles, California, with her husband and son.
This is the site that is mentioned in the story above:
This one is an excellent article on casting:
This link is where parents can join the C.A.S.T. Yahoo support group. It stands for Casts as an Alternative For Scoliosis Treatment. It’s an excellent place to ask questions of other parents who are going through scoliosis treatment at every stage, particularly with babies and young children. New families join every week with questions and it’s a great group of passionate, caring parents.
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