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Crooked Love: The Story of a Boy and the Mom who Fought to Save Him

Bex Scoliosis Shot2 168x300 Crooked Love: The Story of a Boy and the Mom who Fought to Save HimI 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.

Bex Cast Photo 176x300 Crooked Love: The Story of a Boy and the Mom who Fought to Save HimBexon 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!

Heidi and Bex 150x150 Crooked Love: The Story of a Boy and the Mom who Fought to Save HimAbout 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.

breezy deal1 Crooked Love: The Story of a Boy and the Mom who Fought to Save HimBreezy Mama Tip: Want more info? The following references were provided by Heidi:

This is the site that is mentioned in the story above:
www.infantilescoliosis.org

This one is an excellent article on casting:
http://www.urmc.rochester.edu/news/story/index.cfm?id=1619%3c/a%3e%3cbr

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.
http://health.groups.yahoo.com/group/infantile_scoliosis/joinscoliosis.org

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Comments

  1. Thank you for sharing your story!

  2. Rebecca says:

    Thanks for sharing your story Heidi. I am so happy to hear that yours had a happy ending. What a cutie pie Bexon is. :-)

  3. Tracey Reynolds says:

    Oh I wish I would have known about this thirteen years ago! My son has been well cared for at Texas Scottish Rite Hospital free of charge since he was 5mos. He has had so many surgeries I have lost count. To this day his back is curved horribly and they had to fuse it the last time they went in. I would have given anything to keep him from having to experience even half of what he has. I’m just so thankful God has a purpose for him and he is still here to keep me laughing. That is one thing I don’t think will ever change in him is his spirit. Thank you for this article I will be sure to pass this on to the nursing staff I work with!

  4. Heidi Ferrer says:

    Dear Tracey,

    Your son sounds like an incredible boy with an amazing spirit, and I know that God has a purpose for him! I have friends on the Yahoo CAST group who go to Scottish Rite, it sounds like a wonderful hospital, but I don’t think they’ve been doing Mehta casting long enough that your son could’ve benefited from it. I’m so sorry he’s had to go through all that, and that you have, as well. I know our family would be in the same situation with many surgeries, had our son been born even 7-10 years ago. ISOP was only founded and Mehta casting brought to the U.S. when Heather Montoya couldn’t find the solutions she was looking for for her daughter Olivia, who’s now 11. Thank you for posting your comment and for sharing the story with your nursing staff, the more we can spread the word, the better!

  5. Heidi Ferrer says:

    Alysha and Rebecca,

    Thank you! XO -Heidi

  6. Angie Livingston says:

    Heidi—great story! I love my job at Shriners just for stories like this. I am so fortunate that I get to see the “cure” in action. And I am so fortunate to work with the “amazing Dr. D’Astous” not only is he a brilliant surgeon, he is a genuinely nice guy. See you in a few months :)

  7. Heidi Ferrer says:

    Thank you, Angie! Dr. D’Astous is absolutely brilliant and also so humble and kind, we feel SO fortunate that he is Bexon’s doctor (and saving his life and spine at this very moment). You, Mike P., all of the great nurses and the entire staff at Shriners in Salt Lake City blow us away with the work that you do, and you do it with such grace and love for children in need. It has been the best medical experience of our lives.

    For anyone who doesn’t know, the Shriners hospitals do no charge a penny for the state-of-the-art care they give, as I like to say, “not for a prosthetic limb and not for a ten thousand dollar Q-tip”, like so many hospitals do. It is truly what healthcare SHOULD be. Thank you for saving my son, from the bottom of my heart.

  8. I am so glad that worked for you! I have Marfan syndrome, and severe scoliosis (particularly in infants) is one of the symptoms. I was shocked that your doctors waited for bracing till later, especially with how fast your son’s case was progressing. I honestly, in all the kids I know with scoliosis, have never heard of a doctor waiting till 105 degrees and I don’t believe that is normal. That is so terrible! Unfortunately, braces don’t usually work for kids with Marfan and many of them have to have 1 or multiple surgeries on their back. It’s great that your son was spared that! I’m going to do more research on this type of brace now though, in case maybe it will work for kids in our community. Thank you so much for sharing your story :-)

  9. Heidi Ferrer says:

    Hi Maya,

    Thank you so much for your comment! I just want to clarify that my son is being cured by a plaster CAST, not a brace. Bracing is ineffective in cases of Progressive Infantile Scoliosis and if we’d gone with a brace, he would have already needed the first of many invasive, major surgeries by now (at age 2). The reason is because bracing does not cure scoliosis and does not even stop the curve from progressing, in cases like my son’s. He is being cured in a Mehta Method cast (it kind of looks like a plaster vest). Thank you for researching it on behalf of kids with Marfan Syndrome. The key is to begin this treatment EARLY, especially under age two. Thank you for reading Bexon’s story.

  10. Ooooo that makes so much more sense, that it’s a cast and not a brace! Is it only affective if done under the age of 2? I have a girlfriend with a 3 1/2 year old that I’m wondering might benefit from it…

  11. Heidi Ferrer says:

    This treatment is most effective if begun before age two, but it can still benefit kids who are older. The reason starting under age 2 is the most effective is because the human spine grows 50 percent in the first 2 years of life. After that, there are still growth spurts, but the next major one is at adolescence. Some older kids get Mehta casts to hold off on surgery for as long as possible. The casts gently re-direct the child’s own natural growth, and the best time to start is under age 2, with an under 50 degree curve. The lower the curve the better, and the younger you start, the less treatment is needed. We started at 61 degrees, so we may never get all the way back to “zero”, but we will prevent surgery, pain or deformity for our son. It’s so worth it!

  12. Heidi – Thank you so much for sharing your story and spreading the word about early treatment. My son Evan was cured by this method of treatment in 2 short (well it seemed long to me) years:) He was 12 months when he started treatment and his spine measured 49 degrees. Thankfully he is now at zero degrees with a straight spine. This treatment is gentle, yet effective and I hope some day every child suffering from Progressive Infantile Scoliosis can benefit from this amazing treatment.

  13. Heidi Ferrer says:

    Thank you, Barb! Two years is a long journey for the mom and the family, but zero degrees is AMAZING! And, without ever having to have invasive surgery that can lead to so many truly awful complications. I’m so happy for you and for Evan! There is a proven CURE and Evan is living proof!!!

  14. Elizabeth says:

    Hi Heidi,

    Thank you so much for sharing your story about Bexon & your journey thus far with Infantile Scoliosis. We know eachother from the CAST support group, but I just wanted to let readers out there know that my daughter is also being CURED of Infantile Scoliosis as we speak. She is currently 13 months old & was diagnosed when she was 8 months. She is in her 2nd cast from Shriners in Salt Lake City and it’s doing wonders for her little spine. She is on the road to having a straight spine & won’t have to forgo all the invasive surgeries with 100% complications. Mehta’s Method of casting is saving her life & giving her a chance to live a “normal” & pain free life. Thank you for spreading the word. I hope more families of infants with scoliosis will be directed to http://www.infantilescoliosis.org because it really is a life saving site that will benefit your child tremendously.

  15. Heidi, thank you for sharing your story – and to all of you who have shared your experiences, thanks as well for spreading the word about ISOP. The earlier that children are referred for the Mehta method casting, the better the outcome. I too would like to see infantile scoliosis included in well baby screening, along with information about early casting so that parents have all the information to make informed decisions about treatment. They deserve to know that there is a better alternative than the “watch and wait” approach.

    Olivia’s great auntie

  16. Jodie Phillips says:

    Hi Heidi,
    I am so grateful that you found a cure for your son. He is so adorable! I know you will help many people by sharing this information. I had a baby girl 11 months ago and I have an 11 year old son. Take care and I hope to see you soon.

    Love,
    Jodie

  17. Heidi Ferrer says:

    Thank you, Elizabeth! Your precious daughter is also living proof that this method is life changing and saving.

    And Jeanette, as Olivia’s great Aunt, you are ROYALTY to me!! Thank you for reading and for posting. Olivia is a gorgeous, brave girl who is simply changing the world right now.

  18. Susane Turner says:

    Heidi,

    Wow, your story sounds very similar to ours. My sons curve was found at 12 months when he already had an 87 degree curve. He is currently in his 8th cast holding at 32 degrees. ISOP also changed our lives. Heather was there to point us in the right direction when every doctor in the military community and out told us that wa had no choice but to have surgery and fusion.

    I owe my sons life to Dr. D’Astous and his amazing team at Shriners SLC. I will also forever be greatful to Heather and ISOP.

    God bless your little boy!

    Susane Turner

  19. Heidi Ferrer says:

    Dear Jodie,

    Hi, my sweet friend! Thank you for reading Bexon’s story. Congratulations on your new baby girl! The first year is BIG. Boys are a lot of fun, too, aren’t they? I have GREAT news to report, we just shot the very first Public Service Announcement today for ISOP, the non-profit that directly saved our boy. It features actor Peter Gallagher (“The O.C.”, “American Beauty”), who very generously donated his time, as did the entire professional crew. The set was so kindly loaned to us by the TV show “Saving Grace”.

    My husband Nick directed it, and everybody pulled together for a great cause, to spread the word about this life saving treatment to other families and children who will be saved by it. There is GROUND SWELL happening right now for this cause, even the web site http://www.perezhilton.com featured ISOP under “A Worthy Cause” this week. Parent demand WILL make this the standard of care for kids with this condtition, and this PSA will be on YouTube and many TV networks very soon! We’re so happy to have a chance to pay it forward in some small way.

    Love, Heidi

  20. Heidi Ferrer says:

    Dear Susane,

    An 87 degree curve at 12 months is unbelievable! I can’t imagine how you must have felt looking at that X-ray. I’m so happy you found ISOP, Mehta casting and Dr. D’Astous at Shriners SLC, as we did. Our kids are truly the lucky ones. God bless your little boy, too, and my greatest hope is that other families will find the best treatment for their children with progressive scoliosis before the window of opportunity closes, forever. Dr. Mehta’s innovation of applying these casts to babies (when it had previously only been done on adolescents) has simply changed the way this condition should be treated. So many conditions a looking for a cure and we have one, brought to the U.S. by ONE SINGLE MOTHER, fighting for her child, and now for ours. Heather Montoya is an angel on Earth! -Heidi

  21. My daughter, Isabella was diagnosed in April 2007 with a 51 degree curve at the age of 12 months. She has idiopathic infantile scoliosis. She is casted every 2-3 months at Loma Linda University Children’s Hospital. In the past two years, he curve has gone down from 51 degrees to 19 degrees. We are almost there!!! Casting positively works and is a much more gentler and effective way of treating infantile scoliosis. I am so indebted to ISOP and our Mehta trained doctor. We were very lucky to start off with a Mehta trained doctor from the start. Many parents are not as fortunate. We must continue to spread the word as casting is not well known. It is an effective treatment and we must make sure it is available to every child with infantile scoliosis not to mention make sure insurance companies cover the procedure. I have had to fight and fight for my insurance to cover her treatment, but luckily, I’ve won every time. Thank you again for shining a spotlight on ISOP.

    Heidi – thank you so much for what you and your husband have done for ISOP and our children. You are our angels. I can remember reading several conversations on our support group C.A.S.T.S. about how great it would be if we could have media coverage. We would brainstorm about what celebrity would most likely be willing to adopt our cause and how we would try to approach the media about it. Needless to say…..we’ve been waiting for you. Thank you for for your help in moving this cause forward. – Olivia Nanez-Salazar

  22. Heidi Ferrer says:

    Olivia,

    You’re making me cry. I’m so happy for you and for Isabella! My husband Nick is with the editor who is donating his time to edit the first ISOP public service announcement(PSA). I’ve seen a rough cut of the 15 second version and I can say it looks AWESOME!!! It’s very exciting for all of these kids, they deserve the kind of care our little ones were lucky enough to get. We are not angels at all, just driven by the fact that our child nearly fell between the cracks, and that so many others have and will continue to, if we don’t get the word out about this life saving treatment. Thank you for your sweet words.
    XO- Heidi

  23. Hello, my son was dignosed at birth with scoliosis. He is 9 month now and his curve has progressed. I’m sill waiting to get in to see the spine specialist at childrens in Vancouver bc. I’ve been told we won’t get in till2010 and I’m soo mad. Does anyone know of any hospitals that practice casting in Canada. I hate how doctors tell you to wait And see what will happen let’s fix the problem now. I’m glad to hear soo many people have had good results with casting it gives me hope

  24. Heidi Ferrer says:

    Hi Candice,
    I know of a family from Canada who travels to Shriners Hospital in Salt Lake City for EDF, Mehta Method casting. Our doc is there, and he is incredible. Please join the C.A.S.T. Yahoo Health support group for free, and ask any and all questions you have of the wonderful group! There are a lot of factors, but if your child has PROGRESSIVE infantile scoliosis, time is vital. Your child is very young, so that is lucky, but depending on the curve degree, you may want to get an MRI as soon as possible, to rule out congenital scoliosis (bone abnormalities), and any other conditions- most casting docs will need this before casting. Do apply to a Mehta Method doc in the meantime, though, it can take weeks or months to get an appointment. Risser casts are not the same- you want the 3 dimensional, proper EDF casting table. 80-90 percent of infantile scoliosis cases self resolve, but you are wise to be on top of this, now, and do your research. Please feel free to email me privately at bexonsmama@gmail.com and check out the ISOP website at http://www.infantilescoliosis.org

    Best regards,

    Heidi Ferrer

  25. Heidi Ferrer says:

    UPDATE: Bexon is now in cast number 4, and is down from 61 degrees in February of this year, to 21 degrees, just 6 months later! We will get cast number 5 in mid December, and are hoping he will be in the “teens” before Christmas. Go teens!

    Once he gets to 10 degrees or below, he will be done with casts and moved to a brace, for maybe a year.

    If anyone is inspired to do so, the Infantile Scoliosis Outreach Program (ISOP) that was instrumental in saving our little boy, is a small, grass roots, non profit org. that can use all of the help they can get. Even a small donation would go directly to training more doctors and helping more babies and families with this condition. You can donate at http://www.infantilescoliosis.org

    Thank you for reading Bex’s story! – Heidi

  26. Regina I. says:

    I think this article should be sent to each young mother’s pediatrician. They should all be enlightened. I will share this story, as well.

    Thanks for sharing!

  27. Heidi Ferrer says:

    Regina,

    Thank you so much for sharing this with your pediatrician! We will change a lot of children’s lives and futures if IS is added to the well baby checklist, so many children are not diagnosed in time, and it is unacceptable if the orthopedic community does not give their parents the proper advice to find this treatment. Surgery should be an absolute last resort.

    Thank you for reading about Bex! He is thriving.

  28. For more on Bexon’s scoliosis story and video of Bex, visit http://www.girltomom.com

    -Heidi Ferrer(Bexon’s Mom)

  29. Hi,

    Does anyone know of a doctor that specialises in the Mehta method in Sydney, Australia?
    Also, is anyone able to PM me any pictures of their childs back when the curve was smaller, or what it looks like at 20 degrees?

    Thanks so much for your time,
    Emma

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