With the 'writing on the wall' regarding Sarah-Hope's mobility, I reached out to the Children with TAR Syndrome Facebook group. In the first five years of Sarah-Hope's life, I didn't ask to join the group - it was enough coming to terms with our story, and I certainly had no capacity to deal with other stories. Sarah-Hope's medical and therapy team knew her case well, and after burning out my research capacity during my pregnancy, I enjoyed the simplicity of just doing what I was told.
But we hit a brick wall with Sarah-Hope's mobility. I had seen every paediatric orthopaedic surgeon in Cape Town and while I agreed with the conservative approach in terms of surgery, it was very difficult to get direction from surgeons for the physios who were wanting to strengthen Sarah-Hope's ability to stand without inflicting damage on her joints. In all fairness to the surgeons though, with such an unusual anatomy, there is little one can predict as to what the impact will be of any particular intervention.
Most of the families with children with TAR Syndrome who pursue surgery either go to Dr Dror Paley or the Shriners charity hospitals in the USA. I got in touch with Dr Paley for an opinion on Sarah-Hope. In addition to X-rays, video footage of Sarah-Hope moving, he said he needed an MRI of her knees, and 4D reconstruction CT scans of all her limbs. The MRI of her knees alone took three hours, which should have been a clue as to the complexity of her anatomy! It was quite astounding to me that no one locally had actually taken this step to find out to clarify what was happening inside these legs of hers - and it was a big blow to discover. It was confirmed that Sarah-Hope has no knee caps, no cruciate ligaments, her tibia and fibia are rotated as a start... Dr Paley recommended a complex reconstruction surgery which would have required us to be in the USA for a few months of rehab after the surgery. He didn't mention follow up surgeries but from tracking other stories, it is very likely that as the child grows, additional problems emerge which then require further intervention. So starting on a surgical route would mean it would be difficult to get off it. I was also concerned about the transfer of knowledge from the rehab therapists in the USA to local ones to sustain the work achieved in the surgery.
Family contacts helped us to get in touch with another orthopaedic doctor in the USA for an opinion - I was so well served by this wisdom: "the decision is more important than the incision". The doctor was referring to the decision to pursue surgery for a child being one that needs holistic consideration from the whole family. We were also encouraged to investigate the Texas Scottish Rite Hospital for Children.
Going ahead with the surgery that Dr Paley suggested was not an option in terms of cost. Just the first operation / stint in the USA would require us to sell everything we own and we knew that the quote didn't include costs related to any complications that may arise in the operation which we would be naive to think may not arise. We were realistic that as soon as you start the surgical route, it is difficult to get off it. I was also concerned about the amount of time that Sarah-Hope would need to be out of school for surgery / rehab and how this would impact her schooling and our family life.
I arranged an interdisciplinary meeting with a local paediatric orthopaedic surgeon, physio and orthotist to discuss Dr Paley's report. I had to smile at the suggestion that the USA surgeon was both a "genius and manic"! We discussed that we should look to see how we could get Sarah-Hope back on her feet again, even if for just standing transfers. A standing frame would help with this, as well as braces. And so we got the ball rolling on that.
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