It is hard for me to believe Scoliosis Awareness Month is coming to an end. During the month of June we have shared 27 posts related to Scoliosis. When you haved lived scoliosis every month for the past 3 years it is hard to condense all you hope others will learn to just one month. We are extremely fortunate to have ChicagoNow to share our platform and raise awareness throughout the year. I have spent a large portion of the past few days reflecting on what this month specifically has meant to us.
Each story has a child and family attached to it. Many of the stories shared glimpses of their life up to diagnosis and brief updates post cast. This is very standard. The time we spend to get our child to treatment seems to be the uphill climb for many. You read, research, worry, cry, read more, open a door, have a door close in your face and open yet another door praying each one will be the last. The first cast comes with a mountain of turmoil the unending questions, "was this the best decision?" Our children are often blissfully unaware their spines are negatively impacting their lives and we make it abundantly clear when saddling them with armor. Scared, unsure and for the little ones, unable to communicate the armor is help not harm, makes this first of many unbearable.
I remember sitting in the shower the first day of cast one and sobbing. He was my perfect and happy boy. I did this to him. Since then my silent rebellion is often having my husband sign the consent form. This is the best option we have available to us and it is his only HOPE. It doesn't make it easy to allow him freedom and then hand him over for anesthesia, traction and casting a week later.
The Casting Procedure as seen at UAB. The first time I watched this video it was embedded in my soul. It was important I know exactly what he would go through each time. They are warriors, each of them. Whether they have faced the process 25 or 3 times they are warriors. I can assure you I would not bounce back and walk myself out of the hospital only a few hours after facing this procedure. Watching Katie's spinal fusion, I have to marvel at the strength and determination of our friends.
Their struggle doesn't trump the struggle any other family faces when they are given a diagnosis. I cannot count the number of times I have been told at least your child doesn't have ______ fill in the blank with an number of childhood illness. I would never discount the battles so many others face and it is my hope this month shared a glimpse at yet another in the long list of "at least your child doesn't have". I have said before and will say it again, this is your child. You are the only one who can determine how you feel. It is not a contest to see who has it worst. There are Hugs and Hope for any family who is suffering no matter the condition or disease.
When I first researched William's condition the first article I read outlined Infantile Scoliosis in a brief synopsis ending in "left untreated their spines will impact their heart and lungs resulting in early death." We are fortunate advancements in treatment have allowed additional studies to be published showing Derotational Casting as a first line of defense against progression. Our kids will no longer face this risk if treated. Pioneers such as Cotrel & Morel have defined Scoliosis to be a 3 dimensional twist and curve to the spine that using casting could be addressed with greater results. Min Mehta has taken this a step further when she in the 1970's denoted early treatment using a derotation as well as straightening during their rapid growth phase could allow these tiny patients a chance of life free from scoliosis. Further advancements addressed the problems many faced with Risser Casts involving rib deformity using the mushroom shaped cut-out to allow for expansion of the chest wall as well as the introduction of the RVAD measurement to show an early indicator of progression. It has taken nearly 30 years for today's casting to come to the United States & Canada but to the benefit of so many children it has finally taken wing. In the past 6-7 years a handful of surgeons have trained with Min Mehta and embraced Derotational casting as the standard of care for Progressive Infantile Scoliosis. These doctors have chose to share their knowledge with others and are increasing the numbers of surgeons nationwide who are offering this standard. For families on the roller coaster who open the wrong door, the numbers are still too few. For every story we have shared there are hundreds who are not given casting as an option. For these families, weeks, months, & years are lost due to the lack of education, time infants and toddlers with progressive Infantile scoliosis don't have to spare. Growth is the catalyst for their curve, time is growth. We need Orthopedic Specialists to educate themselves on the results and merits casting can provide these families.
What I hope we shared: One story which touched your heart. One story that was worth a share. A conversation with a friend. It is my hope a new mom looks at her childs spine with a new eye. Our mission goes so much further than a month. It extends beyond supporting those who know. Until every child is given the same opportunity our kids have been given, we have not reached our goal. No family walks alone, no child deserves subpar. Advancements start one home at a time, one story at a time, one pediatrician at a time, one orthopedic specialist at a time.
A huge thank you to the families who so willingly shared a glimpse at their most private thoughts & shared their most precious gifts with all of us. Thank to all the readers who were kind enough to send us the wonderful comments sharing your own stories. Thank you to our hospitals and surgeons nationwide who have fought for our children. Thank you for my friends who believed in the Lucky Cast Club enough to say yes when we discussed its creation and have said yes to ever hair brained idea thrown out since. You have helped take a dream and make it reality. Continued prayers and support for all our friends.
Plaster and Cotton, Fiberglass and Tape....That's a Wrap!
Until Next Time, Keep it Curvy~
Catie(Scoliosis Sucks) D.
Tags: Cincinnati Children's Memorial Crawford Spine Center, Dr. D'Astous, Dr. Kim Hammerberg, Dr. Peter Sturm, Halifax Shriners, Infantile Scoliosis, Kansas City Children's Mercy, Lucky Cast Club, Mehta Casting, Scoliosis Awareness Month, Serial Derotational Casting, Shriners Hospital for Children Chicago, Shriners Hospital for Children Greenville, Shriners Hospital for Children Salt Lake City, Shriners Hospital for Children St. Louis