Shafia's Scoliosis Surgery

The day after her 14th Birthday, on October 11 2018, our daughter Shafia was officially diagnosed with severe Adolescent Idiopathic Scoliosis (AIS) . Earlier that year, we had noticed a slight protrusion of Shafia's right shoulder blade. We took her to see a doctor who confirmed she had scoliosis, which is the medical name for an abnormal curvature of the spine. However, only an X-ray would determine the true nature of her spinal curve. When the Children’s Hospital called us to meet with the Orthopedic surgeon a few months later, we were a little concerned. Nothing had prepared us for what was next. Another X-ray followed and the surgeon showed us the image showing her severely curved spine, at an angle of almost 60 degrees. We were completely shocked! Shafia had always been an active, healthy girl and had never complained of any pain.

He explained that Shafia’s curve would likely progress by 1-2 degrees per year, eventually placing pressure on organs like the lungs or the heart. Spinal fusion surgery was the only option to correct her curve according to the surgeon. Spinal fusion is an extremely invasive surgery that involves putting screws and steel rods to hold the spine straight. Fusion surgery involves fusing multiple vertebrae into a single section. Not only is the surgery very invasive as they must cut through all the back muscles, the prognosis could be grim. There could be a chance of infection, blood transfusions, lifelong pain, very limited mobility of the fused section as well as a recovery that could take up to one year. Long term complications include rods that can break and this would mean revision surgeries to go in and remove and repair the broken rods, again having to cut into the back muscles.  

After this diagnosis, we spent almost a year looking for alternative therapies that could spare Shafia such an invasive surgery. We travelled to different cities in North America looking for the very best treatment options for Shafia. By the Grace of God, it was through a chance encounter that we heard about a fusionless surgical procedure for scoliosis that was being performed in the USA. We discovered that there was a team of highly experienced surgeons in New Jersey that were doing a new type of fusionless surgery called Anterior Scoliosis Correction (ASC). 

According to the clinic’s website, Anterior Scoliosis Correction is a motion sparing scoliosis treatment  where “Titanium pedicle screws are placed on the outside of the vertebrae that are causing the scoliosis; a rod-cord (white polyethylene-terephthalate flexible cord) is attached to each of the bone screws in the vertebral bodies of the spine. When the implants are tightened, it corrects and straightens the spine. The affected curves show an immediate improvement right after surgery, and continued improvement over time as the spine remodels.”
 
The ASC surgery is a variant of another type of surgery called Vertebral Body Tethering (VBT) that is performed in Canada on young patients. Unfortunately, this type of surgery is still not available in Canada for maturing adolescents like Shafia.  However, we were relieved to find out that Shafia was a good candidate for the ASC procedure- not all scoliosis patients are. Dr. Antonacci and his team would perform the surgery at St. Peter’s University Hospital in New Jersey. The surgery will involve a less invasive entry through the side (anterior) of the rib cage. The surgeon will place a 4-inch incision under her right arm, deflate the lung and then insert screws in her spine. He would then insert a flexible cord (tether), manually manipulate the spine and pull the cord tight to get the desired correction. (like braces for the spine).  After the day long surgery, Shafia would need to spend around 5-6 days in the hospital for post surgical care. She would have restrictions on bending and lifting for six more weeks. Depending on her healing, she would be back to a normal school routine within a couple of months. Post-operative treatment would include physical therapy and the use of a spirometer, to heal her lungs. A full recovery after a major surgery such as ASC, can sometimes take up to a year. 

Unfortunately, this surgery comes at a high cost.  The surgeon’s fees are $66,000 USD and the hospital portion is $76,000 USD for a total of $142, 000 USD or approximately $195,000 CAD. Our work insurance will not cover the procedure and our efforts to find a surgeon to sign the Ontario Health Insurance Plan  Out of Country treatment application form have been unsuccessful. One of the main reasons for this is because the surgery is still relatively new (<5 years) and there is no long term (official) published data. The fact that Dr Antonacci and his team have done over 375 successful surgeries to date was not enough to convince the doctors to approve OHIP funding for this surgery.

We are determined to make this dream a reality for Shafia and we are hopeful this surgery will help her to maintain mobility and flexibility in her spine so that she can continue to be active and do all the things she loves to do!  While there are still many unknowns there are two things that are for certain. The first being that there is no cure for scoliosis. The second is that you cannot un-fuse a fused spine. With Shafia being only 15, there is a lifetime of medical advancements in her future. By leaving her discs and spine as natural as possible given the situation, we are hoping that we are providing options for her future while stabilizing her curve for now.

Why not just leave it and see what happens? This makes sense if Shafia had a curve less than 50 degrees. Unfortunately, the statistics show that curve’s over 50 degrees (like Shafia’s) will continue to progress. It is quite possible that she could potentially have a curve of 90 degrees by the time she is 35 years old! This could put place undue pressure on her heart and lungs and cause additional stress on her body.

Shafia meets the criteria for ASC at this present time. Her curve has progressed since last year and is almost 70 degrees now. Shafia is suffering from increasing back pain due to the severity and worsening of her curve.  In her adulthood, the condition of her vertebrae could change, arthritis or degenerative discs may set in, all taking ASC off the table and leaving her with fusion as her only option. As hard as this decision is, we feel that given all the options and current research, ASC is the best option for our daughter.  Time is of the essence in order for her to have this life changing surgery.  If we were to wait more than a few more months, her worsening curve may require not one but TWO separate operations to correct it.  Whilst surgery was the last option on our minds a year ago, it is very clear that it is the best option for her now.

The surgical date has been scheduled for March 18, 2020. The months ahead will continue to be filled with physiotherapy, massage therapy and other alternative treatments to keep Shafia as strong as possible prior to the surgery. 

Shafia is a happy, adventurous, kind-hearted, caring, smart and a beautiful gem of a daughter who has shown great strength during this difficult time.  It is our hope that the ASC surgery will give her the best healing for her spine and the best quality of life that she deserves.  She is feeling anxious, yet positive about the upcoming surgery! We are already so proud of Shafia and know that she will overcome any obstacles that come her way. As her parents, we would like to thank you for your prayers and support to help make Shafia's dream of a fusionless surgery a reality.

With gratitude,
Faiza & Latif (Shafia's parents)

Links:

For those interested in more information comparing ASC/VBT to fusion surgery:

(https://www.treatingscoliosis.com/blog/fusionless-scoliosis-tethering-advantages).

Website for Shafia’s surgeons:   https://www.spineandscoliosis.com


43882180_1575554491558526_r.jpeg

Donations

 See top
  • Anonymous 
    • $1,000 (Offline)
    • 9 mos
  • SANA SALEEM 
    • $50 
    • 10 mos
  • Dana Mercer 
    • $100 
    • 11 mos
  • Anonymous 
    • $7,118 (Offline)
    • 11 mos
  • Anonymous 
    • $14,000 (Offline)
    • 12 mos
See all

Organizer

Faiza Ashraf 
Organizer
Kanata, ON
  • #1 fundraising platform

    More people start fundraisers on GoFundMe than on any other platform. Learn more

  • GoFundMe Guarantee

    In the rare case something isn’t right, we will work with you to determine if misuse occurred. Learn more

  • Expert advice, 24/7

    Contact us with your questions and we’ll answer, day or night. Learn more