We have medicalised pregnancy to such an extent and made it so technology-dependent and doctor-centred that the women who are pregnant and their families feel lost, alone, fearful and often uninformed of the choices that lie before them as they consent to a battery of tests such as triple markers, 3-D ultrasounds and amniocentesis. Sameera Khan explains
The moment you first lay eyes on your baby is special. “Okay, mummy, now do you want to know if it’s a boy or girl,” asked the doctor as I was barely getting over the exhaustion and pain of labour. “No!” I shrieked. “Tell me if it’s okay, if it’s fine. Is it totally healthy? Is it all there?” Though I had longed for a daughter, at that point what mattered most was the wellbeing and health status of my baby, not its gender. Only once I had been assured that it had all the required toes, fingers and organs intact, and that everything was functioning the way it should, could I truly let myself relax.
I have been pregnant twice (at the ages of 34 and 38); both were fairly trouble-free. But on the journey from conception to birth, I have found myself lost, alone, sometimes fearful, and very often uninformed of the choices that lay before me. Later, when I talked to women who had been pregnant before and after me, and read some of the literature put out by mothers and researchers in online blogs and books, I realised that there are many questions and decisions (and indecisions) that plague pregnancy and childbirth; many are to do with the health status of the mother and the developing foetus. Unfortunately, most of them remain unanswered and unshared.
That is because we have medicalised pregnancy to such an extent, and made it so technology-dependent (though I think some of it is necessary) and doctor-centred that pregnant women and their families often feel (and are treated as being) incompetent and incapable of having a valuable opinion on the matter.
The first time I underwent the triple marker blood test, I wasn’t told that it was a screening test; that it did not give a diagnosis but a ‘risk assessment’ of the chances that the foetus had an abnormality. The assessment was based on whether the test result was below or above a certain cut-off, along with other factors such as the mother’s age, etc. When I received a normal screening result the first time, the obstetrician assured me that while I didn’t necessarily need to do an amniocentesis, it was still advisable given my age and the fact that only an amniocentesis could positively tell whether the foetus had Down’s Syndrome. The risks of bleeding and possible miscarriage from an invasive procedure like amniocentesis were barely discussed. My husband and I chose not to do the procedure.
The second time I underwent the triple marker I was again assured that my results fell within the normal range. This time, my obstetrician did not insist on an amniocentesis but instead helpfully weighed the risks I ran of having a baby with Down’s (less, as shown by my triple marker results) against the risks I ran by doing an invasive procedure (more). The decision was left to me and my husband; again, we decided against amniocentesis.
At the same time we also sought other opinions, medical and others. Some medical opinions, including from the doctor who did my hour-long 3D ultrasonography, clearly implied that we were stupid not to do the amnio given that, “Ma’am, you are 38!” (this despite the fact that the detailed 3D scan revealed no foetal anomaly and was in any case being done at almost 23 weeks, about five weeks too late for an amniocentesis). Another worried friend felt pressured to tell me about a woman she knew who had received a normal screening result from the triple marker test and didn’t undergo amniocentesis, but then gave birth to a child with Down’s Syndrome.
My friend wanted me to know that I could not trust the triple marker results. That is true, because the false negative result is high in triple marker screening. This means that the test identifies you as being low-risk for having a baby with Down’s or Trisomy 18 or a neural tube defect, when in reality your baby could be affected by any one of these disorders. It can also give false positive results -- ie the test incorrectly concludes that there is a relatively high risk that the foetus has an abnormality.
The point is that these tests are available in order to make further decisions regarding the pregnancy; they can be valuable when the pregnant woman and her spouse are properly informed of their purpose.
So where does this leave the parents-to-be? Confused, isolated and desperate for detailed, sensible information that could make the picture clearer. But in most pregnancy books or websites there seems to be a conspiracy of silence -- pre-natal tests are discussed in a normal routine manner with very little complexity or detailing. It is only gradually that you stumble across snippets of information and put them together to realise that eventually the choices you face are stark and brutal -- that consenting to undergo a pre-natal test means accepting the possibility (likely or remote) that your baby may be born with a disability of some kind. And you have to think about what this means.
At some point in the discussion and debate about false negative triple marker results and amniocentesis, I realised that besides seeking more information on these, what I really needed to do was to confront my attitudes towards abortion and disability.
By the time I had done the triple marker test at 18 weeks, I already felt emotionally attached to my foetus. Though I’ve always believed in a woman’s right to abortion, at that stage I found it very difficult to accept the idea of aborting my foetus. One way of avoiding that eventuality, I thought, was to avoid the amniocentesis. At the same time, I was also worried that the amniocentesis itself could harm my ‘normal’ foetus. I tried focusing on the thought that, if I knew something was abnormal with my foetus, would I still feel the same way about it? Was I ready for a lifetime with a disabled child?
In that particular emotional state, I felt I was. I was lucky that my triple marker result was within the normal range so I could refuse an amniocentesis and avoid the possibility of an abortion. What if it hadn’t been? What if my 3D ultrasonography had shown a problem? Would I still have taken a strong ‘no amnio-no abortion’ stance? I am not sure what I would have done.
Don’t get me wrong: pre-natal tests and scans can be useful in many ways and can offer critical information that can improve the care of mother and baby and also help some parents make an informed choice about the future of the pregnancy. At the same time, one cannot forget that pre-natal tests give us information based on which we have to make hard choices. I often find that parents-to-be and their doctors do not look beyond the test -- let us do this test now, this scan now, and then try this procedure -- at the larger picture. I, on the other hand, found myself steeped in the big issues: What is ‘disability’? When is a disability something to be taken in one’s stride? Can we make space for a differently-abled person within our family and in our society? When does a disability become unacceptable or intolerable? Should only ‘perfect’ (the doctor will use the word ‘healthy’) babies have the right to be born? If my foetus were not perfect and suffered an abnormality of some kind, what would I feel about that? What was my attitude to differently-abled people? Could I only sympathise or respect them from afar, or could I actually care and love one as my own?
Some friends and family felt that I didn’t need to think through all this and disturb myself. I could just do the tests and go with the flow (usually that meant ‘medically terminate the pregnancy if it is found that the baby will be born with some kind of abnormality’). I realised that the only way I could make an informed choice was if I made myself aware of all the possibilities and their consequent challenges, and faced them head on however painful they may be, rather than shove them under the carpet.
Pre-natal tests and scans need to be seen as part of the big picture. On the one hand, it must be acknowledged that such tests involve some very private and complicated decisions by people. On the other hand, it is also important to note that many of these private decisions also carry profound social implications. Thus, it seems vital that such testing be accompanied by a larger public dialogue and debate about our attitudes to disability and disabled people, our view of the girl-child (given India’s skewed male-female census ratio and the role of sex-determination tests in the termination of female foetuses) and finally about whether one can ask questions such as: do some babies merit more of a chance at life than others?
It is the public discussion of pre-natal sex determination that has ensured social (and legal) censure for the termination of female foetuses. Such a discussion has been by and large ignored on the subject of disability and, in most cases, termination of foetuses with abnormalities has been accepted without reflection.
This is definitely not to suggest that women should not have the right to abortion. That choice should be available to all women. Abortion is a very personal decision and a woman may need to make that choice at a particular point in her life. She certainly needs no censure or judgemental gaze; instead she needs support and understanding.
The debate on pre-natal testing, however, needs to become more finely nuanced so that technology is used in a more thoughtful and ethical manner.
(Sameera Khan is an independent writer and researcher based in Mumbai. She writes on issues related to gender and media)
Infochange News & Features, December 2010