Book Review: Being told your unborn child is disabled

In 2011, we were thrilled to be expecting our sixth child. On 3rd January 2012, after a complex pregnancy, Joseph was born. He was a very sick little boy, diagnosed postnatally with Edward’s Syndrome – a rare chromosomal abnormality with a poor, usually fatal, prognosis. Baptised and confirmed, Joseph died on 13th March 2012. The Catholic Church teaches he is a now a saint in heaven who intercedes for us. This is our comfort, our hope and our joy.

 

Our journey, a constant juxtaposition of deep love and deep suffering in equal measure, revealed how systemically embedded the eugenicist-minded Culture of Death is in our healthcare system. We had the fight of our lives to preserve Joseph’s God-given human dignity from eight weeks gestation. We know the searing pain of a challenged pre-natal journey too, as there were markers for disability at his twelve-week scan. Unwittingly, resisting pre-natal diagnostic testing gave Joseph a chance at life which otherwise would have been denied him, and we avoided the relentless, de-humanising pressure to abort that so many have endured right up to birth as the law permits for foetal abnormality. Our capacity to bear such a journey was only possible with Christ and His Church as our teacher and guide and those who cared acting as His voice and His hands.

 

 

Because I Am comprises a Parents’ Resource, a Prayer Diary and a Parish resource, and it seeks to offer a narrative of Christian ‘accompaniment’ through the experience of a pre-birth diagnosis of a possible disability. BIA is the fruit of the Rome 2016 Living Fully Symposium and Conference co-hosted by the Pontifical Council for Culture and the Kairos Forum. Although Roman Catholic Teachings are referenced, this is not an exclusively Catholic but ‘Christian’ text in outlook, and parents, priests and parishes need to be aware of this. With abortion rates for Down Syndrome alone exceeding 90% in the UK, very likely mirrored in Catholic communities, the unmet need for such ministry is vast, and there is material to be commended in Because I Am.

 

The author has professional experience in the field of disability and personal life experience of the crisis of prenatally diagnosed pregnancies, including her own grandson. She offers testimony with insightful honesty and compassion. The underpinning principles of the Because I Am programme are to ‘give focus and attention to the life of the child’ which will allow for a ‘deeper understanding that all people, no matter their ability, are valued members of our lives and held in the love of God’. There is constant encouragement for those who find themselves on an unexpected path in life to ‘remain open to grace; that as we reflect on the life of Christ, ‘with every experience of the cross, there is always resurrection’; that ‘each life has a purpose in God’s plan … we are never alone and we all, always belong to God’.

 

 

Because I Am invites parents to spend time listening to the troubles, worries and reflections of Jesus, Mary and Joseph who are given voice at the times of the Annunciation, the Visitation, the Birth of Christ in Bethlehem and the Presentation of the Child Jesus in the Temple with the prophetic words of Simeon. The centrality of those who listened and helped them on the unexpected path God had asked of them is highlighted. There are personal reflections from the author and three sets of Because I Am parents focusing on love, the gift of the life, walking with God and their own journey with each other and their child. Suffering is addressed too: that suffering is never beautiful but with reference to Simeon is ‘part of the rise and fall of life’ united to God, never to be faced alone. There is honest and hopeful sensitivity in these writings.

 

However, the tone changes in Chapter 4 entitled ‘Living Fully in the Christian Tradition’ as the challenging realities of finding support for the sick and ‘differently-abled’ are explored. Negative language, stereotyping, question marks about viability and eugenic thought processes are presented from their contextual origins. The author hopes to provide a ‘clear and accurate explanation of what the Church teaches so that it may help you on the pathways you have to take.’ In this objective, however, Because I Am falls far short, and on balance I could only recommend it being wisely cherrypicked by those with well-formed Catholic consciences and a complete understanding of Catholic Life Ethics and the Catechism of the Catholic Church. The narratives are also too long and duplicative and ripe for a more manageable read for parents in the midst of profound crisis.

 

 

The Because I Am approach is described as ‘deeply Christian’, ‘non-judgmental’, not projecting ‘our own beliefs’ on others and providing information for parents on the ‘Christian teaching on the human person’. Christian denominations, however, do not all agree on Life Ethics and specifically the issue of abortion. The text even states ‘some may argue that life does not begin at conception but instead when the baby is able to feel, move and respond and in this circumstance feel it would be acceptable to terminate if the mother’s life was in danger’. This unscientific and conflated statement undid so much of the wise and compassionate material in previous chapters. Anglican and Methodist teachings are mentioned, and it is advised that you ‘consult with your pastor about the teachings of your particular denomination’.

 

Primarily we found strength to refuse invasive prenatal testing and battle against the Culture of Death from a formed conscience, the fifth commandment and knowledge of the Catechism. The strength of opposition to pre-natal Catholic life

ethics within a UK healthcare setting is too powerful to resist in such times of suffering without the clarity of the Catechism andthis is a grave omission from Because I Am. Neither is there mention of mortal sin and the sacrament of Confession, given its ecumenical philosophy. God’s mercy is limitless and boundless, of course, but must never be presumed. Well-intentioned pastoral accompaniment must not water down truth – nod to the Culture of Death and it wins

 

 

Four Because I Am pathways following pre-natal diagnosis are described and the third is termination. Odd language such as your child’s ‘right to a good gestation’ is used while still advocating that mother and child be seen as ‘two patients’ on a pathway that will intentionally end the life of the child – medics would disagree. It is suggested that parents may have ‘arrived at this point against your will’, and while this is reality for many, forced abortion is illegal but goes unchallenged. While termination is described as un-Christian, most of the narrative is identical to the other three pathways where baby dies naturally in utero, receives palliative care or is born and lives with disability. This is dishonest, and there are aspects that are theologically and practically unsound and inaccurate from a Catholic perspective.

 

The author writes that ‘in my experience I have found Pathway 3 to be the most painful for parents … the experience of termination, relating to disability, can be extremely traumatic and in my experience can bring you to a place of darkness and guilt.’ This need not be anecdotal as there is now a solid body of evidence, as published in a paper by the Society for the Protection of Unborn Children, showing that when an abortion is undertaken for reasons of foetal anomaly, the after-effects can be particularly traumatic and long lasting.(1)

 

In summary, used with extreme caution and prudence by those of sound Catholic formation, there are sensitive, honest and moving resources which could be extracted from Because I Am to accompany a family faced with the overwhelming prospect of a pre- or indeed post-natal diagnosis for their beloved child, to accompany them and to think through with love and hope what is possible with and for God.