As part of my visit to CRP and I was interested to see the equipment that the centre is making for phsyio and rehabilitation purposes. This type of equipment is often very expensive in Canada, but to keep costs low, CRP makes almost everything themselves.
They have a prosthetics department which custom makes limbs and splints for those who have lost a limb. At BSMMU there are three children who are receiving treatment for bone tumours. Each of these children will need to have a leg amputation to cure their cancer. Afterwards, I hope to send them CRP for a high quality, low cost prosthesis.
|Some examples of what can be made at CRP.|
|Make in Bangladesh prosthetic legs. Much cheaper than those manufactured in developed countries.|
|Prothetic technicians working on leg splints.|
Unfortunately, one of the patients with a bone tumour is a 10 year old girl, her parents are willing to agree to an amputation as part of her treatment, but the rest of the family is strongly discouraging the parents from this, so the parents have decided for her not to have the amputation. This is really sad, as without an amputation she can't be cured. Currently she is removing chemotherapy to shrink her tumour, which is in the thigh bone, but unless the tumour is removed after the next round of chemotherapy then it will spread and she will die of the cancer.
With one of the other doctors, I have had many long discussion with her parents about the need for the surgery; they understand that she will die without, however, because she is a girl, they are worried that with this disability she won't be able to marry. Specifically they are worried that they won't be able to find anyone willing to marry her if she only has one leg. If she can't marry, they don't see the point in saving her life.
It's tragic that it comes down to this, but there is no child protection agency here who could say to the parents, you must allow your daughter to have an amputation as her life is more valuable than whether she can be married. Additionally, the parents don't seem to understand that with a good quality prosthesis from CRP, their daughter will be able to do the regular activities that she needs to do as an adult: walk, cook, and look after her children. This goes back to what I was saying in my previous post about the stigma of disability. The parents have told me that they don't want her to lay in bed for the rest of her life, despite me explaining that she won't be bed bound, but will be able to walk with the prosthesis.
I'm still working with this family and I'm hoping to convince them to go on a tour of CRP to see what is possible. Perhaps this will convince them, more than my words, that she could live a fulfilling adult life.
The other thing that makes this situation really difficult is that I am pretty certain that with chemo and then an amputation followed by more chemo she can be cured. But in reality I don't have enough tests and scans to be 100% certain that she doesn't have any spread of the tumour to her lungs or other areas of her body. If the tumour has spread, then even with an amputation she can't be cured. So we may work really hard and convince the parents to get the amputation and then she may still die. If the parents delay the decision to amputate, it may also be too late as the longer we wait the more likely the tumour is to spread.
I will continue to keep you updated on this story....