This is Caro, sensitive, loving and compassionate.
This is her story….
In Sept 2017 our 13-year-old blue-eyed dreamer was diagnosed with Adolescent Idiopathic scoliosis after we noticed her one hip being significantly more pronounced than the other. The months since then has been filled with endless hours of physical therapy and most of her free and sleeping hours strapped into a brace.
Her day starts at 5:40 when she gets up in order to do her 45 minute daily Schroth therapy exercises, before preparing for school and ends when she straps herself back into her brace for the night. Despite her commitment and sacrifice her curve has not shown any improvement and the emotional impact is ongoing and a daily challenge for her to overcome. Many of the simple pleasures (going to the beach, swimming with friends, buying clothes, sleepovers) that teenage girls love to do and that is so important for their development into a self-confident young woman is becoming increasingly difficult for her.
Because she is skeletally immature with significant remaining growth she has a very high chance of curve progression. Left untreated, it usually continues to progress at an average of one degree per year. Significant spinal deformity leads to noticeable changes in appearance, such as shoulders that are not level, ribs on one side of the body that stick out further than on the other side, uneven hips, and a shift of the waist and trunk to the side. It also can cause increased back pain, and, if the curve keeps progressing, the rib cage may press against the lungs and heart, making it more difficult to breathe and harder for the heart to pump.
In South Africa, the only means to correct the curve and prevent the long-term adverse effects of scoliosis is spinal fusion. Given that hers is a lumbar curve (lower back) and that fusion will mean a significant reduction in mobility we have researched non-fusion alternatives for months. We finally discovered a minimally invasive non-fusion scoliosis correction procedure called Vertebral Body Tethering (VBT) or Anterior Scoliosis Correction that was pioneered in the USA about 7 years ago and we have been engaging with surgeons in Europe specializing in this procedure. The good news is that Caro is a perfect candidate based on her remaining growth. This is essential in order to make full use of the principle of bone growth modulation to straighten the spine. The bad news is that according to her latest X-rays this needs to be at the latest by year end. Caro has been scheduled for surgery on the 6th of November with Prof Alanay in Istanbul.
The estimated cost of this procedure is 45 000 Euro (excluding travel, accommodation for 3 weeks plus follow up costs). Because of the constant weakening of our Rand and the fact that our medical aid has declined our request for partial funding, this is far above our means. We decided to take a leap of faith and create this funding campaign to make this life-changing surgery a reality for Caro and give her the best possible quality of life.
This is Caro’s curve now(left) and what it could look like without intervention (middle) and ultimately fusion (right):
And this is what it looks like from the outside:
Scoliosis is an abnormal curvature of the spine. The normal shape of a person’s spine includes a curve at the top of the shoulder and a curve at the lower back. If your spine is curved from side to side or in an “S” or “C” shape you have scoliosis. About 80 percent of scoliosis cases have no identifiable cause and is termed “Idiopathic”. Idiopathic scoliosis affects 4 times as many girls as boys.
While therapy and bracing my slow down or arrest curve progression there is no cure for scoliosis and most cases (with major curves diagnosed at a young age) ultimately results in spinal fusion. Left untreated it can have severe and even life-threatening impacts.
About VBT / ASC
Vertebral body tethering is the application of vertebral body screws on the convexity and the attachment of a polyethylene tether that is then shortened and tightened. It is indicated for immature Adolescent Idiopathic Scoliosis through a minimally invasive thoracoscopic access to the anterior thoracic spine. The remaining growth potential of the child will urge more growth on the concavity thereby lessening or reversing the deformity while maintaining mobility.
This is what fusion hardware looks like (top) compared to VBT screws and tether(bottom):
And this is the miracle of VBT in action- before (left) after (right):
We are painfully aware that there are millions of deserving causes and even more demands on your resources. If you can afford to donate to Caro’s cause, we will be forever grateful. If you cannot then please spare us a thought and a prayer and know that you are blessed and appreciated regardless.
Thank you for helping us help Caro.
Jaco, Beulah and Caro Rossouw