Picture from a few months back. 3 of these 4 kids have been transplanted and cured while the fourth is getting ready to be admitted.
A few months back we announced the starting of Sankalp-CIMS centre for Paediatric BMT at CIMS Hospital, Ahmedabad. We are happy to share that the new centre continues to deliver upon the promise of excellence in transplantation for thalassemia. Typically, the first few months of a BMT unit are the most difficult period. We are glad to share that keeping in-line with the tradition of the Sankalp-Cure2Children Network for BMT, the first five children who have undergone transplantation are doing very well. Two kids are back home with their families while the other three are in the step down accommodation provided to the families in our program. The staff in our unit have no time to celebrate as they have the next group of kids in the unit eager to take all their time and attention.
It was heartening to see the Bangalore nursing team guiding this new team at Ahmedabad in running the unit efficiently in no time. Since both the centres use BMTPlus, our software platform for transplantations and the units share similar protocols and procedures, the two teams could work together seamlessly.
While the transplant unit is busy, still busier is the outpatient department for the pre-transplant preparation. As we have shown, with persistent and well directed efforts, it is possible to reduce the risk with which the child proceeds for transplantations. Those children who have a match are undergoing a process of down-staging with regular monitoring – with the intention of reducing the risks prior to transplantation. This includes attempts to reduce the serum ferritin levels, control the liver and spleen enlargement and undertake thorough medical screening.
OPD at Mumbai
In order to aid the children who belong to Mumbai and are likely to get transplanted outside the city, we started a weekly follow-up clinic with the help of Dr Sangeeta Mudaliar and her team at B J Wadia Children's Hospital in Mumbai. Even this little initiative is up and running in full swing.
Visit to Dehradun
Following the invitation of Himalayan Thalassemia Society, Dehradun, we visited Haldwani and Dehradun for an HLA typing cum awareness event. The learning from the process of setting up of the several day care centres comes handy in such events as the problems faced by the children are more-or-less the same. Uttarakhand is unique in the sense that all blood products, chelating agents, labs and even filters are funded by the state government for all children undertaking treatment at public healthcare setups, while those in the private setup receive the blood products and chelators. And yet, most of the children continue to be poorly managed.
As we interact with more groups, our conviction that a single point, data driven strong day care centre is crucial to the delivery of care for thalassemia – at-least for those patients who are constrained by resources and education. We are working together with the team there in an attempt to find the way forward.