Bent But Not Broken: The Scoliosis Warrior (Part 1)

Our daughter Kyla was diagnosed with severe Adolescent Idiopathic Scoliosis when she was 12. I noticed that her right upper back has an unusual hump. We were referred to an Orthopedic surgeon/doctor. After undergoing x-ray, the doctor confirmed that it was a case of scoliosis and a severe type of curve. Adolescent Idiopathic Scoliosis means that the abnormal growth occurred during the onset of adolescence. Instead of growing vertically, the spine bent sideways. Severe cases meant the spine curvature is > 45 degrees. Kyla measured at 68 degrees and 43 degrees, for the said S-curve.

68 degrees and 43 degrees curve
This was the last scoliogram x-ray before the decision
to proceed with surgery was finally made.

It was heart-breaking for me. Kyla had to drop the physically strenuous activities that she was so fond of. She was leaning into sports like taekwondo, badminton, cycling, running and swimming. All competitive sports were now out of the picture. Her confidence level dived because she can no longer engage into the activities that she excelled at. We are thankful that the academic officers at St. Scholastica's College-Westgrove were very supportive of the many exemptions needed for her condition. We could not have survived junior high school without their support! 

As they say, when a door closes, God opens a window. It was in this circumstance when Kyla discovered her talent in music. She learned to play the piano with the guidance of her first music teacher (Teacher Joie) who interjected that she has a talent for it.  This became a new source of inspiration for her.

Our Orthopedic doctor/surgeon - Dr. Jose Martin Paiso, suggested that surgery is the best option in severe cases of scoliosis to prevent the curve from getting worse and adversely impacting the other systems (like respiratory,  gastrointestinal, etc.). We chose using Cheneau-type brace before heading straight to surgery. It was explained that bracing will not correct a severe scoliosis and can only slow down or halt the progression of curve. We knew that we were simply buying time for both Kyla and us to be psychologically ready for the surgery.

Living with a brace is not easy. It must be worn 24/7 except when taking a bath or light swimming. You have to sleep in it as well. Thankfully, Kyla did not make a big fuss on having to wear it to school and even if it meant we have to get clothes a size bigger than usual to make room for the brace. If it had been uncomfortable, she did not complain about it. 

After 2 years of wearing the brace, the upside was that the curve did not progress further. She was allowed by the doctor to forego the brace but nonetheless, all of the earlier restrictions on strenuous activities still apply. 

During this period, our family started to get into running.  Kyla was allowed by the doctor to participate in short distance, low-impact runs. She joined us in 3K-5K races and we would do a run-walk sequence. I also encouraged her to join in light yoga and stretching exercises. This was allowed for as long as it doesn’t stretch her beyond capacity. I realized that exposing her into light running and yoga had benefits that she would reap later when surgery became inevitable. The doctor emphasized that exercising helps to strengthen the muscles surrounding the spine.  Her tolerance for activities like short distance running increased.

Kyla's 1st 5K Run in Jan 2018
I love this picture. It is about the triumph of will and spirit.
Photo credits: CDH Resolution Run / Run Mania

Preparing for the Inevitable

And then came the inevitable. Some time within 2018, it became evident from follow-up x-rays that without bracing, the curve continued to progress, and living with a brace forever is not going to be practical and comfortable. Kyla also started to experience pain and discomfort esp. during the cold-weather months. She would cry due to the pain, could not find a comfortable position for sleeping. She also missed several school days and this affected her studies. By December 2018, we finally agreed with Dr. Paiso for her to undergo the Spine Fusion Surgery by Summer 2019. Planning was set into motion.

In hindsight, I realized that waiting for few more years for surgery had its advantages: 1) We were more emotionally prepared for the surgery and it’s aftermath. It gave us time to research on what will happen before, during and after the operation. We were able to prepare Kyla and ourselves on how to manage the recovery; 2) We were able to prepare for it financially. We saved enough for the expenses for operation, doctor’s fees and the subsequent therapies. I filed for a Leave of Absence from my grueling work so that I can focus on giving her 24/7 assistance and care. LOA meant I don’t get paid for the weeks when I am not working so we have to factor that in as well; 3) Most importantly, with God's grace, Kyla is emotionally and mentally prepared at that point.  

Living a life with severe scoliosis, overcoming pain and heartbreak for what could have been and being able to find new avenues for personal growth – all these experiences that happened during the “in-between” time fortified Kyla's spirit. 

Going into surgery, she had a reason to believe that she can overcome this and to not have fear because God will be in control. When we told her that she will be going through the major surgery, by God's grace, she was ready  - mentally, physiologically and spiritually.

(Coming soon.. Part 2: The Surgery and Recovery period)