Vast majority of couples who carry a terminally ill baby to term do not regret it

The diagnosis of a life-limiting condition in an unborn baby is always devastating. These hard cases played a big part in last year’s referendum and moved many people to vote to repeal the 8th amendment. However, new studies show that the vast majority of couples who carry these babies to term are glad that they did so, and also result in more positive outcomes for them in terms of how they feel afterwards. It is a pity this wasn’t more known last year.

A recent piece of research, involving more than 400 parents, showed that more than 97pc of them did not regret continuing  pregnancy affected by a life-limiting fetal condition. This confirms previous studies.

Research conducted in the Duke University Medical Center found that there is “a psychological benefit to women to continue the pregnancy following prenatal diagnosis of a lethal fetal defect”.  The study involved 158 mothers and 109 fathers. It discovered that women who had an abortion “were significantly more likely to report feelings of despair, avoidance and depression than women who continued the pregnancy”. This might be due to different factors. 

The researchers hypothesise that pregnancy continuation allows more time to women to grieve and eventually reach acceptance of the diagnosis. Also, they may receive more support from family and friends as the loss of their newborn is a more visible and acceptable.

Psychiatric symptoms such as post-traumatic stress, grief and depression are common after a pregnancy loss due to fetal anomalies but almost all women who decide to give birth, do no regret their choice. “Continuing the pregnancy allows more opportunities to find meaning and for memory making, such as opportunities to hold and care for the baby, take photographs, create other keepsakes and perhaps participate in research, tissue or organ donation, all of which can contribute positively to the grieving process”.

The analysis showed that “items related to guilt and avoidance were endorsed more often by women who terminated”, while pregnancy continuation was associated with less psychiatric distress. “The active choice involved in termination does appear to increase the likelihood that guilt will be experienced, even in the case of lethal fetal anomalies.”

Another qualitative study of parents who did not abort their disabled children, published in the Journal of Prenatal Psychological Health, claims that “contrary to common societal reaction where the focus is on what is wrong with the baby, these parents focused on everything positive about their babies.” The article describes how their parenting experience was accelerated and compressed, knowing that the time with their baby was brief and unpredictable. Some couples created opportunities for them and their families to interact with the baby when still in utero, with the help of ultrasound machines. Most planned carefully the birth, the funeral, and sometimes the baptism of their child.

All parents “expressed feeling about needing to be as close to their infant as possible”, in the form of physical intimacy and also in enjoying the limited but precious time with their child. Focusing their love on the present moment and also on memory-making allowed them the opportunity to find meaning in their suffering.

A study by the University of Rochester Medical Center mentions the often insensitive treatment from health care providers. “Parents were often perplexed that their health providers were not able to understand their needs. This finding is consistent with previous work showing that some physicians questions the parents’ decision to continue the pregnancy”. Another study found that most of genetic counsellors mentioned abortion as an option (83pc) but only 37pc discussed pregnancy continuation and 13pc presented adoption as an alternative to termination 

This confirms what we heard during the referendum campaign from families who had similar experiences, who felt pressurised to abort.

The Duke University study also inquired about the psychosocial support provided by religious communities to grieving parents. They compared those involved in Organisational Religious Activities (ORA), such as attending church services, to those who expressed their religiosity more individually, in activities such as personal prayers, meditation, etc. (No Organisational Religious Activities or NORA)

They found that “while ORA and NORA are associated with pregnancy continuation, only ORA was associated with [good] psychological outcome. … As organised religious activities (ORA) increased, reported amounts of grief decreased.”

The researchers suggest that attending church or other religious meetings contribute to reduce grief following pregnancy loss, probably due to the support provided by faith-based communities.

All these studies prove that even if their baby is doomed to die, those who do not choose abortion have more positive outcomes. These parents transform their tragedy into a profound and intimate opportunity to meet, hold and cherish their child. 

Even though we now have legalised abortion in this country, couples faced with news that their baby will not live long past birth should be made aware of studies such as the above so that they can arrive at a fully-informed decision.