Everybody who has siblings knows that the relation
etched out between them is very clear- a love-hate relation, a relation where a
lot of things are acceptable which otherwise would not be in any other
relation. Siblings can fight each other, be utterly mean to each other, wreck
each other’s lives and still have that tiny ounce of bonding between them. Let
us just say that siblings add the spice to each other’s lives. But, what about
those siblings that are bound to each other by a very unusual kind of bond?
What if one of the siblings is the reason the other
is enjoying the bliss in life? What if one of the siblings epitomizes
sacrifice? Does the innate love-hate relationship still exist or does it make
way for a formal obligatory relationship? When a brother and sister or two
sisters fight each other, they fight as equals. Even with the age difference,
there is a constant race to prove that the younger one is as tough as the older
one. Given this status quo, how much would a relationship change when one
sibling assumes a higher pedestal and the other a lower. When one feels
indebted to the other, the dynamics of the relation change. There is no longer
a friendly banter, and competitive arguments. Some awkwardness is bound to
surface in this otherwise no holds barred relation.
This imbalance in the positions comes in when one
of the siblings is a donor and the other the recipient, .like in the case of
bone marrow transplant. Bone marrow transplant is required as an antidote for a
number of fatal diseases like leukemia, neuroblastoma, severe aplastic anemia,
and several immune deficiency disorders. In an Allogeneic bone marrow transplant, the donor shares the same genetic type as
the patient. Stem cells are taken either by bone marrow harvest or apheresis
from a genetically-matched donor, usually a brother or sister. Before a donor is identified, it is essential
for the donor to undergo genetic matching and being a sibling does not
necessarily qualify a person to be a match.
Matching involves typing human leukocyte antigen (HLA) tissue. The antigens on the surface of these special white blood cells determine the genetic makeup of a person's immune system. Although there are at least 100 HLA antigens, it is believed that there are a few major antigens that determine whether a donor and recipient match. The others are considered minor and their effect on a successful transplant is not as well-defined.
Medical research is still investigating the role all antigens play in the process of a bone marrow transplant and it is not yet clear how every antigen plays a role in the transplant process. An established fact though, is that the more antigens that match, the better the engraftment of donated marrow. Most of the genes that "code" for the human immune system are on one chromosome. Since every person has only two of each chromosome, one is received from each of the parents. Hence, a full sibling of a patient (sibling that has both parents common) in need of a transplant has a one in four chance of having gotten the same set of chromosomes and being a full match for transplantation.
The question then is, if a sibling is a full match for transplantation, is it ethical to consider him/her as a donor. We have to remember that for adult donors, there are informed consent documents that are signed, and thus, are a representation of the donor’s will to be involved in the transplantation. What happens when the donor is a child? Is it actually the child’s free will that is being exerted? It is the parents who sign the documents as guardians, and as tough a choice it is for the parents, their decision is going to be biased in favor of the ailing child.
The most serious risk associated with donating bone marrow involves the use and effects of anesthesia during surgery. After the surgery, the donor might feel tired or weak and have trouble walking for a few days. The area where the bone marrow was taken out also might feel sore for a few days. According to Mayo Clinic, the donor is likely able to get back to their normal routine within a couple of days, but it may take a couple of weeks before they feel fully recovered. It is evident that donating bone marrow does not have any serious side effects, but the fact that the normal life of the donor sibling is disrupted, raises concern.
And although children are involved in this scenario, we forget how receptive children can be. By appointing one child as the caregiver for the other, are the parents introducing a feeling of indebtedness instead of the normal bantering relationship? The awkwardness is just one side of the story. What if there is contempt and anger at the thought of putting your body at stake for your sibling? How long can one be a self-sacrificing martyr? What happens then?
It is essential for parents and healthcare providers to scrutinize the dynamics of this complicated relationship before selecting children as bone marrow donors. Preserving cord blood is being recommended by doctors rampantly, and may very well be the future of transplant options. The probability of finding a match from an unrelated donor is also quite high and might save families the trouble of avoiding the guilt of having to choose the welfare of one child over the other. Given that this facility of National Marrow Programs does not yet exist in India, it is an area that needs to be explored and established. With a number of Marrow Banks on the spurt, maybe that is an option which is healthier for the mental health and social dynamics of the family.
Relations never come without complications, but a donor-recipient relation is one that is innately convoluted. In such a situation, isn’t it too much to entangle two relations; that of siblings and a donor-recipient? Is it fair to rid the children of a normal childhood? Are their any laws in place for the donor sibling and how can it be ensured that the rights of the donor child are not violated? These are some issues that need to be addressed by medical rights agencies, and affected families alike, when looking at transplant options. Irrespective, a question that would remain unanswered: “Is it ever possible to have a relation, no strings attached, be it a familial relation, a medical relation, or for that matter any interaction involving humans?”
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