So your Infant was just diagnosed with Infantile Scoliosis...Now What?

Dear New Infantile Scoliosis Mommy & Daddy,

Tonight as you read you are probable wondering, how the heck did you get here?  You gave birth to a miracle and have loved and nurtured them into who they are today. You may have noticed a head tilt or unbalanced sit.  You might have been oblivious, as I was, until your pediatrician or neighbor or mother nagged you until you finally had the first x-ray read.  It doesn't matter how you found out your little sweet thing had a curvy spine, what matters is where you go from here.  You are going to see a specialist, if you haven't already.  This is one of those pivotal steps in the process where life will try to mess with you.  If you open the wrong door you will be met with resistance.  The right door, you may hear news you aren't prepared to stomach.  The reality, now is the time to grab your prettiest pair of big girl and boy panties and move forward.

The following advice is based on my experience.  It doesn't replace the advice you will hear from experts, it is here to enhance your experience.  My CV is not impressive, it is however extensive.  I have a PhD in fear, a Masters in HOPE, & a BS in well BS.  With my spouse, Chicago Sisters, & my Salt Lake City misfits, we started a support family nearly 4 years ago for families living with Progressive Infantile Scoliosis.  We have made HUGE steps, had great success, and utter disappointment.  Through it all we have stayed together and grown our family to 176+ kids, 4 countries and countless centers that specialize in Infantile Scoliosis.  My first pearl of wisdom, find a center that feels right to you.  I quickly learned that the best children's hospital in your area, may not specialize in pediatric spinal care.  In Southern Indiana if my child had Juvenile Diabetes or Congenital Heart defect I would be comfortable visiting one of the two big children's hospitals in Indianapolis.  My son, however, has Progressive Infantile Scoliosis and I wanted a center and surgeon who specialized in orthopedic care, specifically  infantile scoliosis.  I wanted Dr. Kim Hammerberg and Shriners Hospital for Children Chicago.  You will have to find the center and surgeon you are comfortable with.  Ask questions, ask to speak with other families who are currently in treatment with your surgeon.  They will be the best referral source and sounding board you will have.

Once you have found a center it is time to explore your options.  No two spines are the same.  You will hear numbers and let me assure you even the smallest curve will seem huge and earth shattering when it is being uttered about your child.  Curves that are borderline, under 30 degrees with no or little rotation, may be watched.  Since 80% of these cases will self-resolve it is not uncommon for an experienced orthopedic surgeon to wait.  The key here is to ask what your child's curve is measuring, most experienced surgeons will check the borderline cases every 8-12 weeks.  If you are at any point uncomfortable or unsure, it is indeed your right and responsibility to seek a second opinion.

If your child's curve is progressive, you may be starting casting sooner rather than later.  While casting is the best first line of defense, it is not a get out of scoliosis free card.  You may start the process and gain nothing more than time.   There is indeed the chance you will start the process and gain correction, for some you might even achieve a life free from scoliosis.  It is worth the chance.  17 casts, 4 years, I don't regret the process.  There were moments where I wondered how I could hand my child to the OR staff one more time.  Times where I wondered if the journey was worth the miles.  Now, just weeks from the next step,  I crave the security of my casting world.  The known for me is far less scary than what lies ahead.

I have 7 minutes to publish, so I am going to leave you with this;

"We gain strength, and courage, and confidence by each experience in which we really stop to look fear in the face... we must do that which we think we cannot."~Eleanore Roosevelt

You can do this!

Until Next Time, Keep it CuRvY~

Catie (Scoliosis Sucks) D.

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  • Hi Catie,
    Maybe this is all explained in your Facebook, but I'm not part of the FB world yet. When is your son having surgery? Are they implanting growth rods? As you know, I am a huge proponent of MAGEC magnetic rods. I was ready to move to England or Hong Kong or anyplace to get the MAGEC rods, however the FDA granted my son limited compassion use to implant the MAGEC rods. If you have the $, go to England. If you need to have the surgery in the U.S., I suggest talking to your doctors about Shilla growth rods as they avoid multiple surgeries like the MAGEC rods, but they don't provide the same tension as the MAGEC rods. Best always, God Bless.

  • In reply to Anthony’s Dad:

    During William's last casting they found a shadow that existed on his films for some time that is consistent with a Hemi Vertebra. This will give us a new path. We for now will move to a brace. We most likely will undergo genetic testing due to other pieces of the puzzle that seem to showing. We will absolutely explore they magnetic rods when that time comes. You are the innovators and trendsetters for this amazing new journey! Blessed to have you both in our scoliosis family. My friend Celeste wants to get in contact with you. Her daughter Chloe will start surgery soon.

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