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The Value of a Microcephalic Life (beyond the fetal double-talk)

April 17, 2016

A recent NPR story on pre-natal detection of the effects of the Zika virus caught my attention a couple of weeks ago.  Although I was alerted by the foreboding reference to the mother’s loss in the teaser that appeared in my email inbox, the following two sentences still hit me in the gut:

The woman decided to terminate the pregnancy. And she allowed [OB-GYN] Driggers and her colleagues to study the baby.

I had to stop and read those two sentences over, slowly.  I know too well the kind of double-talk heard in the stark difference in terminology between wanted and unwanted pregnancies, but rarely have I seen it employed in such immediate juxtaposition: literally from one sentence to the next, it went from a pregnancy to a baby.

The story uses such terms pretty much interchangeably, which is not necessarily problematic in itself, though it is subtly revealing.  In the context of the initial and quite natural worry – “Was her baby going to be OK?” – it’s hard to imagine using any other word.  Most (though not all!) other instances, discussing the diagnostic process, refer to “the fetus”, which technically is a perfectly correct reference to a particular stage of development.  What is truly disturbing is that the fetal life is acknowledged as a life, but, aside from that initial expression of worry for his or her well-being, is valued only for the purpose of research.

I wrote in a previous post on the value of an autistic life, “We are rightly horrified when someone suggests that the life of a person with a disability is not worth living – but what about when the same thing is said of someone yet to be born?  Can we sense the same sting in such a claim when it is made before that person has been given the chance to be known and loved?”

One person who was given that chance and now lives with microcephaly as an adult, Brazilian journalist Ana Carolina Caceres, voiced that connection publicly earlier this year, speaking to the BBC about the challenges of her condition, her mistaken prognosis, her family’s support, and her pursuit of journalism “to give a voice to people like me, who do not feel represented.”  On the idea of abortion as a solution to the condition, she says:

I can say that today I am a fulfilled, happy woman.

With the spike of microcephaly cases in Brazil, the need for information is more important than ever. People need to put their prejudices aside and learn about this syndrome.

Including the health minister. He said that Brazil would have a “damaged generation” because of microcephaly. If I could speak to him, I would say: “What is damaged is your statement, sir.”

Microcephaly is a box of surprises. You may suffer from serious problems or you may not. So I believe that those who have abortions are not giving their children a chance to succeed.

I survived, as do many others with microcephaly. Our mothers did not abort. That is why we exist….

So when I read that activists in Brazil were urging the Supreme Court to allow abortion in cases of microcephaly, I felt offended and attacked.

I believe that abortion is a short-sighted attempt to tackle the problem. The most important thing is access to treatment: counselling for parents and older sufferers, and physiotherapy and neurological treatment for those born with microcephaly.

Women with disabilities have been making this point for some time regarding selective abortion based on disability and the demeaning implications of this on the value of their own lives.

And so now has Pope Francis in Amoris Laetitia.  In par. 47 he quotes at length from the final report of the Synod of Bishops on the positive witness of families that welcome members with disabilities:

Families who lovingly accept the difficult trial of a child with special needs are greatly to be admired.  They render the Church and society an invaluable witness of faithfulness to the gift of life.  In these situations, the family can discover, together with the Christian community, new approaches, new ways of acting, a different way of understanding and identifying with others, by welcoming and caring for the mystery of the frailty of human life.  People with disabilities are a gift for the family and an opportunity to grow in love, mutual aid and unity…  If the family, in the light of the faith, accepts the presence of persons with special needs, they will be able to recognize and ensure the quality and value of every human life, with its proper needs, rights and opportunities.  This approach will promote care and services on behalf of these disadvantaged persons and will encourage people to draw near to them and provide affection at every stage of their life.

After reaffirming the same appreciation again in par. 82, he then turns in 83 to fetal rights and ultimately the right to life at every stage until natural death:

Here I feel it urgent to state that, if the family is the sanctuary of life, the place where life is conceived and cared for, it is a horrendous contradiction when it becomes a place where life is rejected and destroyed.  So great is the value of a human life, and so inalienable the right to life of an innocent child growing in the mother’s womb, that no alleged right to one’s own body can justify a decision to terminate that life, which is an end in itself and which can never be considered the “property” of another human being.  The family protects human life in all its stages, including its last.  Consequently, “those who work in healthcare facilities are reminded of the moral duty of conscientious objection.  Similarly, the Church not only feels the urgency to assert the right to a natural death, without aggressive treatment and euthanasia”, but likewise “firmly rejects the death penalty”.

And in par. 170, he stresses the importance of accepting children as they are in light of modern capacities for prenatal scientific knowledge:

Scientific advances today allow us to know beforehand what colour a child’s hair will be or what illnesses they may one day suffer, because all the somatic traits of the person are written in his or her genetic code already in the embryonic stage.  Yet only the Father, the Creator, fully knows the child; he alone knows his or her deepest identity and worth.  Expectant mothers need to ask God for the wisdom fully to know their children and to accept them as they are.  Some parents feel that their child is not coming at the best time.  They should ask the Lord to heal and strengthen them to accept their child fully and wholeheartedly.  It is important for that child to feel wanted.  He or she is not an accessory or a solution to some personal need.  A child is a human being of immense worth and may never be used for one’s own benefit.  So it matters little whether this new life is convenient for you, whether it has features that please you, or whether it fits into your plans and aspirations.  For “children are a gift.  Each one is unique and irreplaceable…  We love our children because they are children, not because they are beautiful, or look or think as we do, or embody our dreams.  We love them because they are children.  A child is a child”.  The love of parents is the means by which God our Father shows his own love.  He awaits the birth of each child, accepts that child unconditionally, and welcomes him or her freely.

To the point, as more and more knowledge of fetal development becomes available, what is done with that knowledge is a choice as stark as life and death: it can be used to determine whose life is worthy and whose is thrown away – or it can be used to point ever more clearly to the intrinsic value of every human being, regardless of brain size or chromosomes or gender or any other features, both before birth and for all the years after.

 

 

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