Elle had been diagnosed a year earlier with severe scoliosis. You would think with a spine curve at a -49 degree you would be able to notice it by the way Elle was standing. Nope.
Elle's Body BraceThe strange thing is that her body had adjusted to the curvature - she looked like she was standing straight. The only outward sign was her spine had disappeared from view when you looked at her back. Other than wearing a swimsuit you didn't see her back - so it was easy to not notice. The only complaint that Elle had initially had was her neck bothered her from time to time. We attributed it to her sleeping wrong.
Elle's diagnosis would occur during a routine physical before entering High School. She had a physical three years earlier. The doctor mentioned in passing that she had a slight curvature of the spine - no big deal - we would keep an eye on it. It definitely did not come across as something urgent or one that could become an extremely dangerous problem.
July 2008 - Raylan and I had just returned from a two week European vacation with the kids. Malus (Elle's Step-Mom) was angry about the trip. Elle had checked in with Dick every few days. Malus didn't think that was good enough - she needed to be called separately from Dick and wanted the calls when it worked best for her. She didn't like when I told her "We didn't come to Europe to arrange our entire day to call you because that what works best for you!" Tensions were extremely high!
Elle's physical was scheduled for two days after we returned. The doctor appointment would happen in Dick and Malus' care. I had planned to come along, but got a call from Malus the evening prior that she needed to reschedule the appointment and would text me the date later. Turns out - it was a complete lie. She kept the appointment.
I called Elle later that day to check in. "Mom we went to the Doctor and she said I have" Malus yelled at Elle in the background to not say anything - she would call me back and tell me. Elle said "I can't tell you Mom, but it's really bad!"My heart sank. The phone disconnected. When I called back there was no answer from any their phones for six hours. Payback for not making calls as she demanded from Europe. It was an extremely cruel payback! After one hour of waiting - I called the doctor directly.
Nurse: I have here you're are not her legal guardian according to Malus(Step-Mom)...- she is.
Me: What???
Nurse: So the doctor can't talk to you without her permission.
Me: Did anyone bother to ask for proof of her guardianship before you changed my child's medical file?
Nurse: Uh - No.
Me: I have custody of my child - the doctor knows that I have custody of my child and that Malus does not! Give the doctor the message or we will have a lot bigger problems than this!
The doctor called back within five minutes. Doctor: I'm so sorry - Malus had come in with you before and assured me that she would immediately relay the information to you or I would have called you directly...... Elle has an extreme curvature of the spine which can only be corrected with surgery. I've recommended a couple.....
It would be another five hours before Malus would call back. "Dick and I are taking Elle to see this doctor at this time - if you can make it fine - if not we'll take care of it!" I wanted to scream. What kind of human being uses a medical problem with their child as an opportunity for payback for some stupid wrong she thinks was committed against her? An evil one.
We would end up two doctors later with a child spine specialist. The doctor Malus had made the original appointment with didn't even treat children! Other that scaring my child - she was useless. She told all of us that Elle's spine needed to be operated on immediately - life threatening. Elle looked at me "Mom am I going to die from this?" "No honey - you're not!" The truth was I didn't know.
Finally, we met with the correct doctor, he said Elle would eventually need surgery, but there was no rush - we can schedule it like a family vacation. He was fine with waiting a while for Elle to get used to the idea, but wanted to try a brace to see if Elle would make any improvement. He totally put both child and parents at ease with the whole situation.
The brace would be extremely painful to wear for Elle. When she did wear it became clear how twisted her spine was. Her body had adjusted to the curvature - so when it was straightened she looked completely hunched over to one side. It was a horrible!
Stay tuned for Curvature of the Spine - Part 3 on Monday.
If you missed it check out Curvature of the Spine - Part 1.