Content warning – this post briefly mentions blood, and discusses some surgical procedures.
‘The Reality Of…’ is a series with the aim to raise awareness of disabilities, illnesses, impairments, etc. Also, educating others about the barriers that disabled people and carers face. I hope this series helps to break down misconceptions and stigma.
Life doesn’t have to stop when you have a disability.
Hi there everyone! My name is Jamie, and I’m 30 years old. I am from Opelousas, Louisiana, USA.
I guess my problems all started in utero. My Mom had a troubled pregnancy with me – she had a miscarriage before becoming pregnant with me. During the entire extent of her pregnancy, she had spotting and bleeding, eventually leading to her being put on bed-rest at 5 months pregnant. At 7 months pregnant, she got up one night to pee, and passed a large blood clot, and was rushed to ER. They decided to do an emergency C-section, and by 10:36am, I was born 2 months premature at 3lbs 6oz and 16 inches in height. I spent my entire first month of life in NICU, even with my parents having to go home and visit daily.
After my ‘home-coming’, I only spent 2 weeks at home, before ending up back in the hospital. I was not keeping food down and drastically losing weight. I was diagnosed with Pyloric Stenosis. During my infancy (maybe at birth), I was diagnosed with another rare condition called Ehlers-Danlos Syndrome (EDS).
At 8 months of age, during my physiotherapy session at home, my PT noticed my spine looked like it was starting to show signs of curving. Mom had also thought so previously, so after my PT said that too, Mom took me to a Paediatrician and they referred me to an Orthopaedic, at New Orleans Children’s Hospital. I was diagnosed with Scoliosis.
What is Normal?
I am not sure at what age of my infancy, Mom had a bad incident with one Paediatrician and found me a new one – she took me in for a check-up, and asked the doctor, “What did he see?” as he looked at me, trying to see what she didn’t see. However, he could have worded it differently as all he said was, “You can just look at her and see she isn’t normal”. That upset Mom and she called Dad immediately afterwards and said, “We are changing Paediatricians ASAP!” In Mom’s opinion, “What is normal? We were all made to be different. This is her normal.”
At almost 2 years old, I changed from New Orleans Children’s Hospital to Shriners Hospital. The Doctor in New Orleans kept ‘flip-flopping’ between whether to do surgery before or after I started walking – my parents were losing confidence in him and they didn’t know what they would do, then one day, fate struck.
We were on our way to New Orleans and Dad happened to get pulled over. The Trooper asked Dad, “What’s the hurry?” and Dad explained that we were on the way to a Doctor’s appointment and were running a tad behind. The Trooper saw me in the backseat, with my ‘Scoliosis self’ and let Dad off with a warning. He also happened to be a Shriner and gave my parents the contact details for Shriners Hospital.
After another appointment with ‘Doctor Flip-flopper’, they decided to seek a second opinion through Shriners and called the hospital. The next day, they sent some Shriners out to examine me – they measured the curve of my spine, had taken notes on my milestones and if I was delayed (which I think I was), etc. I then became a Shriners patient, until age 17 years old.
Surgery and Remaining Independent
At 2 years old, I had my first Scoliosis surgery. They took a rib from my side and were going to use that to fuse my spine and as I’d grow, my spine was supposed to straighten itself out (well, my spine apparently did not get the memo and did not co-operate, but that’s a later part of the story). After surgery, I had to wear a cast that was itchy and uncomfortable (I forget how long, but I remember Dad would stick the hose of the vacuum in there to give me relief for the itching!) After I had the cast removed, I was moulded and had to wear a body-brace (or as I called it, my ‘body jacket’), and wore that daily until I was 8.
I was told for as long as I can remember that “as soon as I went through puberty, I’d have another surgery,” However, my body decided as usual to not co-operate, instead decided to delay my puberty until I was 15. By that point, my curve had worsened and developed into two curves, and the story changed to “Nothing else can be done without risk of paralyzing.”
My parents never wanted me to have to depend on anyone and raised me as independently as possible. I could never say, “I can’t” do something without trying. Also, the daily summer camp I attended for Special Needs Individuals CAMP WE CAN DO, also instilled that in me; maybe a little too well! I hate asking for help. I will risk my health to do it myself: Climbing shelves at stores, climbing cabinets at home, etc. My fiance always fusses me!
At age 17 and a half, I was discharged and without any recommendations of Orthopaedics to follow up with. I went 2 years without one until Mom wanted someone to at least ’follow me’, so we went to a well-known local Orthopaedic who took one look at my x-rays and said, “This looks like a rollercoaster!” (Try living with it, dude!) “This is way past my expertise”. However, he did recommend us to a Doctor in St Louis. The Doctor is a well-known surgeon of complicated cases, he has developed/patented some of the tools or techniques they use in surgeries today. I was able to get in to see him within 6 months of the referral!
I first met the Doctor in January 2011. I had a list of questions but I got shy and nervous about some of the more personal questions. I read through the ones I wasn’t nervous about, but he could tell I was nervous about some. Instead of just letting it go and not worrying about my questions not being answered, he took my paper from me, read through them and answered truthfully. Then he told me, “It’s medical, no reason to be embarrassed.”
He looked over all my info and said “Yes I can do the surgery. Will you get paralyzed? Well… possibly, but if you don’t have surgery, your spine will keep curving until it collapses, so you might be paralyzed anyway.” Also, it turned out, I had Kyphosis (Humpback) – an abnormality of the spine causing excessive curvature, with pain and stiffness. He called it Kypho-Scoliosis. After having been told I couldn’t have surgery, and now we had found someone who could, Mom and I were in the bathroom crying happy tears!
Next, was my pre-op appointment which was less happy. First, I had to be there at 7:30am. I had to have an MRI and CT scan, and blood tests. (Yeah, that was fun for someone who has an intense fear of needles and pain!) Then I had to do a PFT (Pulmonary Function Test) which was so hard and it hurt. I didn’t see the Doctor again until 8pm that night. That was a 12-hour day, I was exhausted and already emotional.
Then came the bad news – my ribs were twisted around my spine, he would have to cut through them to get access to my spine; not a big deal, except my PFT revealed my lungs were crushed and only functioning at 18-20% lung capacity. He told me he’d put me into Halo Traction at the Shriners Hospital (despite me being 20). I could be in traction a full year and he still would not be able to do surgery, but we would see. I would begin Halo Traction the next month, right after the New Year began (2012).
I spent 7 and a half months in Halo Traction, without my parents, miles away from home and all things familiar. Mom would come up on weekends, and she would sometimes bring visitors. My paternal grandmother stayed a week with me, she brought up my best friend and many family members too. I made many new friends during my stay, with the staff, and other patients. I had managed to double my PFT numbers with exercising on the treadmill and exercising my lungs with an IS (Incentive Spirometer) and PFT tests once a month.
In August 2012, I had my first phase of back surgery, I ended up with pneumonia and had to have a tracheostomy afterwards. In September, after I recovered from pneumonia enough to get my strength up, we did the second phase of the surgery. He managed to take a 159 degree Kypho-Scoliosis (total curve) down to 60 degree curve. I went home with the tracheostomy and later developed symptoms of Sleep Apnoea and now sleep with BIPAP/CPAP machine before I could get the tracheostomy removed.
During my hospital stay, they had found Wolf Parkinson White Syndrome – an extra electrical pathway between your heart’s upper and lower chambers which causes a rapid heartbeat. They believe it is related to my EDS. I had an ablation to correct/close off that extra pathway in January 2013.
Everything Has Shaped Me into Who I Am
I have had some minor setbacks – a wound on my back which was caused by broken rods, I had the rods fixed in 2019, and instead turned out that it was infected rods; I’m still taking antibiotics for that. But even still, I try to live my life as best as I can. Sure, there are days where I am stuck in bed with pain (mostly cold weather/winter months are brutal), and living on pain medication. Even though I have gone to college (taking a break right now, but plan to resume), I have lived on my own independently in an apartment when I could afford it, lived with my fiance, etc.
However, I find going through my disabilities all my life, even the bullying I endured, the staring in public, the mouldings for my body brace, the inadequate Doctors, the arguments with hospital staff, the struggles in school, everything – I find that it has shaped me into the person I am and that person is compassionate, loves hard, cares deeply about others, defends those who can’t defend themselves, and believes in justice. I am pretty proud of who I am as a person.
My Favourite Superhero
My favorite superhero? Hmm… I am not really into comic books and stuff. I mean, I watched Batman, Spiderman, etc. and I like Harley Quinn, however a few years back, I drew my own superhero – Scoliosis Girl.
Thank you Jamie for raising awareness!