No longer alone in calling for fetal anomaly scans for all
In late 2007, I came back to work in Cork from London, where after years working in fetal medicine research, I had been training as a specialist in maternal and fetal medicine. This was in a busy tertiary-referral centre for complex fetal problems and complicated multiple pregnancies. At that time with the fetal surgery field fast developing, new interventional procedures were being offered while termination of pregnancy was an option chosen by many parents we looked after.
I knew when I decided to practise in Ireland that working in fetal medicine would be different, not least because of the options available to parents after prenatal diagnosis of fetal anomaly. In addition, all of us working in this area know that the complexity and diversity of problems we see on scans involve degrees of uncertainty regarding prognosis, anticipated lifespan, and severity. This always requires a comprehensive and individualised approach to care from diagnosis. I expected that I would have to find my own way of giving honest and open information to parents, but I knew my training and experience would be of benefit in the practical reality of managing these pregnancies.
From 2007 on, my colleagues and I developed the ultrasound services we offered, and we initially focussed on establishing our early pregnancy unit and multiple pregnancy service, before working on our fetal assessment unit. We looked at offering just one detailed ultrasound scan, but by then all women were having a first trimester scan, and this has advantages to date pregnancies and recognise multiples, as well as diagnosing fetal anomalies early. So we realised we would have to aim for providing two scans in every pregnancy, a dating ultrasound scan in the late first trimester, and a second-trimester fetal anomaly ultrasound scan.
I accepted it would take time to train our midwife sonographers and ensure all the right facilities were in place; staff worked hard to achieve this. Over this time, I developed a multi-disciplinary pregnancy loss team, where parents who experience pregnancy loss of any type or cause are supported and receive compassionate care — irrespective of their pregnancy choices.
However, I did not anticipate that in 2017, despite years of personal engagement on this issue, Cork University Maternity Hospital would still not be able to provide access to fetal anomaly ultrasound scans for all pregnant women. At CUMH, this means we either fail to diagnose some major problems with babies in pregnancy at the ‘right’ time, or we diagnose them very late or after birth. Parents and families miss opportunities for information and explanation, preparation or choice, birth plans and, sadly, bereavement care. Some babies have worse outcomes and the option of fetal therapy may be lost, while others may have complicated deliveries or be transferred for intensive care away from their parents. Hospital staff, especially our doctors-in-training under my responsibility, many of whom have never worked in a world without prenatal diagnosis and anomaly ultrasound, are often traumatised and feel responsible where a baby with a major or fatal undiagnosed anomaly is born.
Where problems are seen on scans late in pregnancy, it is my role to break the news and explain the implications. You know the impact of your every word is huge, and the parents’ view of a previously ‘normal’ pregnancy is ruined in minutes; you change their lives forever. When I meet parents back at my pregnancy loss clinics, I have found myself trying to explain how a major fetal anomaly was not diagnosed or diagnosed late. I hope I have always been honest with them and I cannot justify the lack of anomaly scans, but I hate apologising for our failure at CUMH to provide what is a basic standard of prenatal care elsewhere. Similarly, while we do our best to assist parents dealing with the aftermath of difficult delivery and either unexpected bereavement or disability, I have never seen the scenario of undiagnosed fetal anomaly at delivery be anything less than shocking and traumatic for everyone involved. Not surprisingly, there can be a long-term impact on families. In subsequent pregnancies these parents are fearful; their confidence in the hospital has to be restored and they need significant levels of support from us through our specialist clinics. These aspects of my job are not easy, and the work can be stressful, challenging and sometimes exhausting. You can’t feel sorry for yourself compared to the impact on parents and families though — so you just hope you get them through the difficult times and that they trust you to see them through another pregnancy — one with a happy outcome. Finally, I am glad that all the implications of not providing fetal anomaly scans are now being openly discussed, and that I no longer seem to be on my own in advocating for this situation to change.
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