Breda O’Brien: Why terminology matters when it comes to pregnancy loss

The recently released National Standards for Bereavement Care Following Pregnancy Loss and Perinatal Death chose to use the term "life-limiting condition" rather than fatal or lethal foetal abnormality. They did so while recognising that some parents would not choose to describe their child's condition as life-limiting. So why use it rather than fatal or lethal foetal abnormality?

For starters, it is the term used in palliative and hospice care. Furthermore, there are great difficulties involved in defining lethal or fatal foetal abnormality, as outlined in a paper published in the British Journal of Obstetrics and Gynaecology by Wilkinson et al.

It is quoted several times in the standards. Wilkinson et al tried to establish if a clear definition of lethal/fatal abnormality existed, and whether an agreed list of conditions existed that met the criteria. They found neither.

In fact, there were four commonly used definitions. The first is a condition that invariably leads to foetal death in the womb. The second is a condition that invariably leads to death in the womb, or the newborn period, regardless of attempted supportive treatment. The third is a condition that usually leads to death in the womb or the newborn period, and the fourth is a condition that has been associated with death in the womb or in the newborn period. They found the second definition was probably the most frequently used today. They give the example of women who have been counselled following a diagnosis of genetic disorders Trisomy 13 or 18, who are told the conditions are incompatible with life. However, in the past the fourth was most commonly used. As the authors point out, “definition two does not accurately describe any of the congenital malformations that are commonly described as being lethal”.

Prolonged survival

Prolonged survival, they conclude, has been recorded in all of the conditions commonly described as fatal, with the exception of bilateral renal agenesis, a condition where the kidneys fail to develop. This paper was written in 2012. Remarkably, since then, one case of prolonged survival has been recorded in the case of bilateral renal agenesis.

Jaime Herrera Beutler is only the ninth woman to give birth while serving in the US Congress. She received an experimental treatment involving replacing missing amniotic fluid with saline, and her baby, Abigail, was born at 28 weeks. Abigail began receiving dialysis and, at age two, received a kidney transplant from a very special donor – her father. Both are doing well. Some of recorded survival times for children with alleged fatal foetal abnormalities are startling.

For example, babies with anencephaly have survived to 2½ years. There have been recorded cases of someone with Trisomy 13 surviving to 27 years, and to 50 with Trisomy 18. Of course these long lives are truly exceptional. But here in Ireland, Kathleen Rose Harkin, who is living with Trisomy 13, has reached her ninth birthday, and has been described as the heart of her family. She certainly has the most beautiful smile: everylifecounts.ie/stories/ kathleen-rose-harkin/

Medically misinformed

The authors of the Wilkinson paper go on to ask why practitioners use terms like lethal or fatal. They suggest it may be because medical personnel may be misinformed about survival rates. For example, 58 per cent of babies born with Trisomy 13 live more than a week, and 8 per cent survive more than a year. At least two Irish people have lived beyond 21.

Or as the authors suggest, it may be because medical practitioners are aware of survival rates, but believe these are lives not worth living to their natural end. The latter is very troubling, if it is true, because it involves a judgment on the value of a baby’s life, one not shared by the majority of parents with devastating diagnoses.

I would recommend a visit to the website of Soft: softireland.com/ family-stories/a support group for parents of children diagnosed with trisomies, or Every Life Counts, everylifecounts.ie, or One Day More, onedaymore.ie, to read accounts of just how valuable these little lives are, and how a lifetime of love can be poured into their short existences, despite incredible grief.

Some people believe that you could not put a mother through the experience of continuing a pregnancy only to see her baby die. But what if the outcomes are worse for mothers who choose termination? And what if more healing is possible when someone is fully supported from the moment of diagnosis to the moment of death with a sensitive, highly professional multidisciplinary team?

The standards also cite Anette Kersting’s research, which found that women who underwent termination of pregnancy for a foetal anomaly had a much higher risk of complicated grief and mental ill-health – more than double the risk for a woman who had experienced pre-term birth, for example.

It would be wonderful if we could discard flawed terms like “fatal foetal abnormality” and “incompatible with life”. Then we could get on with helping all families to have the possibility of living through these devastating diagnoses without having to resort to ending brief and fragile lives even earlier than is necessary.