Scoliosis Awareness Month: One Local Family’s Story

The day they handed me my long-yearned-for baby girl, Lora Leigh, she was simply perfect: ten little fingers, ten little toes, a full head of dark hair and a perfect little bow-shaped mouth.

A few days later, just as we were about to leave the hospital, she turned a strange shade of yellow and was diagnosed with a mild case of Jaundice. After assuring the doctors that I had a bright, sunny, curtain-less home, they allowed us to take our precious baby girl home with us.

And she was, indeed, perfect – the most trouble-free baby a first-time mom could ask for. She rarely cried, she slept through the night very quickly and often well into the next day. She drank cold bottles straight out of the fridge and was almost never sick. I’m not kidding. In the 13 years she’s been on this earth, I can recall two stomach upheavals, one case of thrush, one bout with strep, and one case of the flu. She did have a couple of bladder infections, mainly because she would rather wait until the very last second than stop whatever she’s doing to go use the bathroom.

Her doctor’s appointments have been, for the most part, the annual kind, where they measure her and weigh her and give her shots. You know, routine stuff.Until she turned 11.

Xray August 2012Just a few weeks after her Harry Potter Birthday Extravaganza of 2012, at her annual checkup, her pediatrician, Dr. Danielle Calix, noticed something was off. Lora’s shoulders were crooked, so were her hips, and one side of her back rose higher than the other. She made Lora bend over to touch her toes (which she could not do).

“I think this is Scoliosis,” the doctor said, and sent us off for X-rays. 

A series of X-rays later confirmed it. My beautiful, perfect baby girl had “significant” Scoliosis, with a lumbar curve of 31 degrees.

Oh, I knew something wasn’t right. I knew her posture was a little off and that she always looked rather awkward. I just chalked it up to her height and, well, puberty. She always was off the charts for her age and one of the tallest in her class. But I never noticed there was something wrong with her – not until I knew what to look for.

According to the Scoliosis Research Society, Scoliosis is an abnormal lateral curvature of the spine. On an X-ray, the spine will curve like an “S” or a “C.” Although mostly seen in adolescent girls, it can affect anyone of any age, male or female. The most common form is Idiopathic Scoliosis, which has no known cause. Only 2 to 3 percent of the population is diagnosed with Scoliosis, but girls/women are eight times more likely to develop the condition. There is no cure. The main treatment is bracing through early puberty in hopes of slowing the progression of the curve. Once a curve approaches 50 degrees, most orthopedists recommend spinal fusion surgery, during which rods, screws and pins are inserted into the bent portion of the spine to straighten it. Left untreated, the curvature of the spine can cause a myriad of problems later on, including breathing problems, pressure on internal organs and pain. Some doctors do believe in alternative treatments, including yoga, pilates and other forms of exercise.

Shortly after her diagnosis, Lora was fitted for a hard plastic brace, also known as a Boston Brace, which she wore for 12 to 13 hours every day. After a few days of trying it at school, Lora elected to wear hers mostly at night. For a while, it worked. Her curve went from 31 to 33 to 35 degrees, which is considered an acceptable progression. At one point her doctor declared that he did not believe surgery would be necessary.

Then she hit a growth spurt.

Lora's back June 2014Not only did she out-grow her $500 brace in just a few short months, she sprouted past me to a height of 5 foot 5 at the age of 12. And her curve increased to 45 degrees.

We were sent to see an orthopedic surgeon. Now my perfect baby girl, who is now a moody 13-year-old teenager,  is scheduled to undergo a 5 to 7 hour surgery on July 3rd,  which, we hope, will straighten her spine and let her lead a normal life. When it’s over, she also will be about three inches taller.

And we owe it all to a diligent pediatrician who knew just what to look for:

  • Uneven shoulders and/or hips
  • An uneven waist
  • A shoulder blade that protrudes more than the other
  • One side of the back is higher than the other

Of course, now that I know what to look for, I see it everywhere. I was interviewing a tall, young baseball player just a few weeks ago and noticed that his shoulders were very crooked. I urged his coach to get him checked. I also spotted it in a photograph of a supermodel who was doing a simple yoga pose with her infant daughter. I’m certain that my late mother-in-law developed Scoliosis late in her life, which caused her great pain.

June is National Scoliosis Awareness Month, and I hope parents will see Lora’s story and learn from it. I know there is nothing I could have done to prevent this. Scoliosis may be genetic or it may be caused by a miscommunication in the brain. Lora was adopted at birth, so it may have been passed on from her biological parents. I know I beat myself up for not seeing it myself, for not spotting it, but I also know it wouldn’t have made a difference. And while I am very anxious about her upcoming surgery, we are convinced it is the best course for her.

I have learned that, in England, there is very little known about Scoliosis. Doctors do not routinely check for it. Through an online support group, I have seen many adults who are in extreme pain and are just now learning that they have Scoliosis, but their doctors won’t touch them. We can only wonder what early intervention would have done.

The key, of course, is education and awareness. Many schools in our area do routine Scoliosis checks every year. Good pediatricians (like ours) know what to look for. But parents should too.

About Lori Lyons

Lori LyonsLori Lyons, a former Times-Picayune reporter, is a freelance sports writer for several local news and sports outlets and mom blogger. Married to former Destrehan baseball coach Marty Luquet, she has successfully navigated the perils of stepmotherhood, infertility, adoption and caring for aging parents. She is the stepmother to Daniel, 31, and Courtney Luquet, 28, and the mom to 13-year-old Lora Leigh. She writes about her family, baseball, adoption and, now, Scoliosis, at her blog The Lyons Din.

6 Responses to Scoliosis Awareness Month: One Local Family’s Story

  1. Sarah June 6, 2014 at 3:03 pm #

    My Mother works on a Radiology ward in a hospital in the UK and she regularly sees Scoliosis patients. I also vividly remember my Doctor checking my posture and shoulder alignment during my check ups as a child. It’s a shame that some people were missed, but saying that little is known about Scoliosis in England isn’t exactly fair. Or true.

    I know that several celebrities have come forward with stories of their treatment, including Princess Eugenie. I’m not sure if your daughter will relate to any of them, but if might be nice for her to read about their treatments. A friend of mine had treatment for scoliosis when she was about your daughter’s age, and at the time a girl band called All Saints were quite popular at home. One of the members, Melanie Blatt, often talked about her brace and subsequent surgery and I know it made my friend feel at ease knowing that someone she looked up to had gone through the same thing.

    Wishing your daughter the best of luck for her surgery! I know it’s easier to say than do, but try not to worry. She’s in safe hands!

  2. Brittany June 13, 2014 at 9:48 am #

    When I was in high school, I had scoliosis surgery at Children’s Hospital performed by Dr. Andrew King. My surgery was a success, and I am now 32 years old and scoliosis does not affect my life in any significant way. I have some back pain, but that is likely because I do not exercise or stretch enough, and any small amount of pain I feel does not impede my daily activities. In fact, I am currently pregnant for my third child, and I have had very little back pain during each of my pregnancies.

    Good luck with your daughter’s surgery. She is in excellent hands at Children’s Hospital.

  3. Tanja Cleary June 29, 2014 at 9:52 pm #

    Best of luck to your family while your daughter has surgery & recovers!
    Our 16 yr.old daughter just had her spinal fusion & rod insertion on May 30 of this yr.

    She also had a lumbar curve that hit 45 degrees.

    We are THRILLED with the surgery & results. Yes, it was the mist difficult day of my parenting life to know she was in surgery but the recovery has exceeded all of our expectations ! We cleared our calendars for six months thinking she could do nothing but walk.

    She walked within 24 hrs of surgery….was off all prescription meds by the 3 week mark & did grow a full 2 inches. Her incision healed beautifully, no trouble at all ! She slept a lot & tired easy the first few weeks, & we only had her in a car once/twice.

    We visited her surgeon last Monday & he could not believe her progress & cleared her for any activities that wouldn’t have a chance of falling. So, she joined her varsity dance team for two modified practices & said that being able to move the other parts of her body helped her back feel stretched out too & she loved it! She takes an OTC ibuprofen as needed.

    She also swam this weekend & said that too felt amazing . Her only true discomfort is sitting in one place for too long. She says the rod & pins do not hurt .

    These kids are my heroes ! So resilient !

    Btw, ours was discovered thru school screening .

    All the best to you during this journey & I know that she will feel remarkable after !

    Tanja

    • Marta Gerrity December 13, 2014 at 12:14 pm #

      Tanja I read your story and wanted to ask you if you might be kind enough to answer some questions for my daughter and let her know about your experience with scoliosis. She is 20 years old recently diagnosed and scared to death. We never knew she had anything like this and never mentioned a thing about anything. I feel like a total failure of a mother for not noticing although no one else did either including her doctor. Thank you, Marta Gerrity

  4. Stacie July 2, 2014 at 9:09 am #

    Thanks for sharing scoliosis story. We need national campaigns and a marketing effort. There are 6 million people living with scoliosis and 30,000 kids have surgery every year. Almost that many are living in braces. Why isn’t this bigor news? More commonly screened? Only 21 schools require screening in the US. A test that takes seconds. With Schroth PT covered by insurance and bracing working 74% of the time! Detection is key! Thanks again for sharing.

  5. Jade July 17, 2014 at 9:52 am #

    I am a scoliosis girl too! I am sixteen and I have been wearing a back brace for almost 6 years. It certainly puts strain on your emotions especially when you were told you would only have to wear the brace for 2 years. I have to wear it basically 24/7 and living close to the equator, it can get very hot sometimes. Nevertheless, I have adapted. I was told by my surgeon I may have surgery this December and my emotions were everywhere. I was put through SIX YEARS of a rigid brace to prevent surgery and yet it was basically a waste of time. However I am also glad that my scoliosis journey could be at an end. I find it great to have others to talk to for moral support and I am so happy for all those people who got to experience this journey, it has made us all tougher and for that you must be thankful. Survive scoliosis, survive anything 😛

    How did her surgery go? How was recovery? Keen to know for my surgery.

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