Surgery update!

Published July 19, 2013 by Caitlin Rose

Despite securing NHS funding for Caitlin’s surgery, we find ourselves in the very odd position of announcing that our little girl will now have SDR by Dr T S Park @ St Louis Children’s Hospital. This is the eminent surgeon who perfected the technique and taught the UK surgeons. It’s been a really tough decision to give up funding and we will try to explain why we’ve reached this decision. Two years ago we took Caitlin to Bristol for assessment. It’s a long long process (waiting list for assessments, waiting list for surgery) and we thought we were close to the end (having transferred to Great Ormond Street Hospital). However a curve ball was thrown at us at the last hurdle. Despite Caitlin being accepted for SDR in the UK (and funding approved) the multi-disciplinary team could not offer a prognosis. We could just about endure that as we were sure she would do well (knowing her strength and determination) but when the team said it could take her a year to regain her current function we were concerned. Very concerned. SDR is a major operation and it’s imperative that parents feel the treating team are entirely confident. We applied to Dr Park recently and received the endorsement we needed to hear. The report said that Caitlin is an excellent candidate, her walking and stamina will improve, her sitting will be normal, she can give up formal physio in a few years time (BIG thing), will be able to join in normal activities with her peer group and may not need lengthening surgery. We had not planned to go overseas for this operation but now that we’ve taken this decision we feel honoured that Caitlin will be under the care of a team whose experience is unrivalled. Many of you will know that Caitlin’s mum is a registered nurse working for the NHS. Ever faithful to the NHS she continues to campaign for the availability of this surgery to other children who fulfil the criteria.

2 comments on “Surgery update!

  • God is good for real….. Hope the Joseph and Ford family can connect on this side of the pond….. Caitlin, it’s gonna be alright! (Ian, CheChe, Giovanni and Hope)

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