Friday 23 February 2018

Mind Matters: Dealing with the reality of foetal anomaly

Patricia Casey
Patricia Casey

Patricia Casey

When I was a medical student, many years ago now, our lecturer in obstetrics referred to infants with anencephaly (a condition in which part of the brain is missing, occurring during embryonic development) as "anencephalic monsters".

A well-known journalist wrote in a respected Irish newspaper last year that these were children with no heads.

A taxi driver whom a friend spoke to was under the impression that women whose babies had anencephaly were being forced to carry dead foetuses.

Some commentators have incorrectly stated that these babies experience intense pain.

These graphic descriptions are grossly inaccurate, hurtful and disrespectful to the babies and to their families.

Any expectant mother will have dreams for her baby.

She will have an image of him or her before they are born and many proud parents text the ultrasound pictures of their unborn child to their family and friends.

I know this, because it has happened in my place of work and it is inspirational to see the love in the parents' eyes even at that very early stage of the child's existence.

Imagine the terrible jolt at being told that this baby has a problem that will lead to a very early death, at, or soon after, birth.

Imagine having to recalibrate your dreams to perhaps only having that baby for a few minutes or days, but certainly not into childhood.

Some now live much longer and one lady whom I saw recently had given birth to a baby girl who lived for two months.

She treasured every day of her little child's life.

Politicians last week debated a bill that would have allowed for the termination of these pregnancies.

One politician, Richard Boyd Barrett, spoke movingly of his personal experience of having a daughter who had such a condition and of the difficult decision he and his partner took to go to England to end the pregnancy.

He told of his pain at burying her.

Irrespective of whether one carries the baby to term, by the early induction of labour, the sense of loss and pain is intense.

There has been little research on this topic although some is available. Most of the studies are "qualitative" in nature. This means that the study consists of in-depth interviews and common themes that emerge are identified. What's the research say?

One study called My Baby is a Person: Parents' Experiences with Life-Threatening Foetal Diagnosis from the University of Rochester in New York (2011), found that those who chose to continue with the pregnancy reported intense emotional reactions and inconsistent, often insensitive treatment by healthcare providers.

One of the themes that emerged was the parents' desire to honour and legitimise the humanity of their unborn baby, hence the title of the paper.

They described the interruption of their parenting, which for them had already begun, as "arrested parenting".

Another theme was the sense of utter aloneness compounding their personal grief and they identified 'fragmented healthcare' with disjointed and distant encounters with multiple providers.

They also identified the lack of understanding of what they were experiencing.

Another study, this time a quantitative one, authored by Charlotte Wool from the University of Texas, examined data from studies carried out between 1970 and 2010.

It was published in 2011 in a journal, Advances in Neonatal Care. It showed that regardless of the option taken, women experience intense grief reactions.

Non-aggressive obstetric management allowing natural birth without life-sustaining therapeutics was an option for families and couples presented with such a co-ordinated perinatal palliative care model, and allowed couples to opt to continue the pregnancy.

Families experiencing these hospices were reported to be positive about their experiences.

There are no studies comparing the psychological outcome for those choosing hospice care over terminating the pregnancy for so-called "fatal" foetal anomalies.

Studies of abortion for other foetal anomalies, most commonly Down Syndrome, compared with giving birth, show that these have a significant rate of psychiatric complications, with up to 20pc in some studies developing major depression.

Other studies also show there is an impact upon subsequent pregnancies in that disclosure of the pregnancy is delayed, as is attachment to the baby, while attachments to healthcare professionals and other parents with similar experiences were heightened.

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