Banking On A Child...
- Parents, on doctors’ advice, are conceiving a second child to farm stem cells for an ailing elder child
- At least 24 ‘saviour sibling’ transplants have been carried out in Delhi, Chennai and Calcutta
- Cost: around Rs 10 lakh
- There are ethical concerns, such as the abortion of foetuses unsuitable as donors. Also the question of the harm extraction of marrow from infants can cause.
Rachit Jain, aged three, has only cheerful babble to offer when asked why he was wheeled into hospital. Neither does he understand the complexity of donating part of his bone marrow and cord blood to save his brother Mudit, aged six, from thalassaemia. But that hasn’t stopped him from becoming the “hero” of the Jain family—as Mudit’s born saviour. “We decided to conceive a second child to try and see if healthy stem cells recovered from the second could be used for treating Mudit,” says their father Manish Jain, who works with a private infrastructure firm in New Delhi.
They were fortunate. Rachit was born free from thalassaemia and had a “full house match” as a suitable donor for Mudit. The Jains, whose son underwent a successful stem cell transplant in New Delhi’s B.L. Kapur Hospital in June 2010, are part of an emerging “saviour sibling” trend in India: parents of an ailing child conceive a second, often on the doctor’s suggestion, to harvest stem cells for the elder sibling’s cure. At least two dozen such transplants, costing some Rs 10 lakh each, have been carried out across Delhi, Chennai and Calcutta in the last few years. It’s not as if a second child is conceived solely with the first’s cure in mind. As Jain puts it, “Even if it didn’t work, we’d at least have a second child who would be healthy.”
To be sure, it has made many families happy. But the trend has also raised several ethical concerns. Chief among these is the termination of healthy foetuses once it is determined the would-be saviour foetus is of a different tissue type and therefore not a suitable donor. There is also a debate on when exactly it is safe to draw out bone marrow from an infant donor. Most doctors say it should be when the donor is around two years old, However, there are instances in which bone marrow has been drawn out of babies barely six months old.
Dr Dharma Choudhary of B.L. Kapur Hospital, who handled Mudit’s case and has carried out 10 other such transplants, argues that urging parents to consider having a second child is indeed valid medical intervention. “We tell them clearly there is a 25 per cent chance that the second kid could also be thalassaemic and a 75 per cent chance that the foetus may turn out to be an unsuitable donor,” he says. In all saviour sibling cases, a chorionic villus sampling (CVS) test around 12 weeks of pregnancy establishes if the baby has thalassaemia or not; the foetus is aborted if it does. After the screening for thalassaemia comes the human leucocyte antigen (HLA) test, to determine from the genetic make-up its suitability as a donor. Some hospitals controversially even offer the second test around the time of the first to find out if the foetus is ‘usable’ or not before delivery.
Dr Ashis Mukhopadhyay, who has carried out five such transplants at Netaji Subhash Chandra Bose Cancer Research Institute in Calcutta, recounts an incident in 2004 in which a middle-class couple, who had a healthy girl, conceived a second baby just to bank her cord blood. They thought they’d be able to use her stem cells in case anybody in the family developed a life-threatening disease. But an HLA test on the three-month-old foetus revealed that it was not a suitable donor. Then they had it tested for gender and aborted it because it was female.
Dr Revathi Raj, who’s with Apollo Hospitals in Chennai and has carried out eight successful stem cell transplants using cells from younger siblings, says her unit offers the HLA test only after delivery. “There obviously is disappointment, it’s like touching something hot. It burns your skin, it hurts you,” she says, describing how parents feel when they find that stem cells from their newborn cannot be used. She knows around 10 Indian families who have gone abroad, especially to Singapore and the US, to use a technology that enables screening of embryos for desired traits: they learn if the stem cells of the embryo match the requirements of the elder child and cut out the possibility of a non-saviour sibling.
The Ahmad girls An ethical riddle that solved itself: Saliha, the donor, and sister Asiya (standing), healthy post-transplant. (Photograph by R.A. Chandroo)
For some parents, the thought of aborting a thalassaemic foetus itself presents an ethical labyrinth. Shafeeq Ahmad, an accountant in Chennai, is one such father. A local doctor who was carrying out regular blood transfusions on his thalassaemic daughter, Asiya, suggested the idea of a saviour sibling. “Islam doesn’t permit abortion. I spoke with many religious scholars, and some said I could abort and some advised against it. I was really confused,” he recollects. Ahmad and his wife still took the plunge, as it was the “only road” open to them. “By God’s grace, we were lucky to have a girl who was healthy and who also turned out to be a perfect match for Asiya,” Ahmad says.
Sandhya Srinivasan, executive editor of the Indian Journal of Medical Ethics, says ‘saviour siblings’ throw up several concerns. “It is a particularly drastic step, creating a life to save another,” she says. “There’s no discussion of the harm, even if little, that can be caused to the healthy child, for instance, during the extraction of bone marrow.” The policy statement of the American Academy of Pediatrics (AAP) on minors as stem cell donors says risks to minor donors can be “more than minimal...with a few serious complications”. The latter include those arising from anaesthesia or injuries caused to any nerve, bone or tissue.
But there has been no similar statement put out by the Indian Academy of Paediatrics or any discussion. Meanwhile, doctors work independently, using their own individual ethical parameters. Asks Srinivasan: “Can a two-year-old give an assent at all, especially if it is for something that will bring him no benefit?” During discussions between the family of a patient and the doctors, AAP also recommends the presence of a “donor advocate” whose objective is to “protect and promote the interests and well-being of the donor”. In India, we still do not have what is known as a donor advocate.
Moreover, there have been cases where even stem cells successfully transplanted have been rejected by the host, causing the patient to relapse. Doctors say it happens in 15 per cent of cases.
There’s the case of Moinam Pal, who in May this year underwent a transplant carried out by Mukhopadhyay using stem cells from the bone marrow and cord blood of her younger sister. The transplantation ended in rejection. Despite the counselling doctors offer parents to apprise them of the risks, nothing really prepares them for the worst. “Just let us come to terms with this shock,” says Moinam’s inconsolable father, Asim Kumar Pal.