Lethal fetal abnormalities are uncommon; we made only 20 such diagnoses in fetuses after 18 weeks' gestation in three defined categories over four years. For many, diagnosis in the first trimester is possible with combined ultrasound or biochemical screening and invasive testing; however, late diagnoses will continue to arise as incidental discoveries.3
Furthermore, skeletal and renal abnormalities may require serial scans and second opinions before lethality can be established.
Most women request termination after a diagnosis of lethal abnormality. This was true for 60% in our cohort. Feticide is usually carried out for termination after 22 weeks.1
This may be unpleasant for parents and clinicians, and some parents would rather continue the pregnancy. Without feticide, such a termination risks livebirth even in the context of diagnostic certainty regarding lethality,1
with the attendant complications of birth registration, and even possible referral to the coroner.
Advances in neonatal care and prenatal diagnosis are cited as reasons for reducing gestation limits for termination. New imaging modalities, such as three‐dimensional or four‐dimensional ultrasound, or fetal magnetic resonance imaging, would not facilitate earlier diagnosis in cases reported here. Interest in these imaging modalities is in our view a distraction to the debate on the gestation time at which termination is legal.
Restrictions to the upper gestation limit for termination of pregnancy would magnify the challenges for clinicians and parents, as a limit of 20 weeks would require detailed scans to be taken at 16–18 weeks, which is before a confident diagnosis of renal or skeletal abnormalities or chromosomal markers is apparent. Also, there are inherent delays from referral to specialist review (in our series, this was up to 14 days), and from review to diagnosis and subsequent parental decision (of up to 8 days).
We report that 40% of couples made a positive decision not to terminate the pregnancy, preferring to pursue perinatal palliative care. This may avoid feelings of guilt,2
and allow parents and other family members to spend time with, and prepare for, the baby's death. Here, an advance individualised plan of care should be agreed on by the parents and the obstetrics, midwifery and neonatal staff, aiming to optimise outcomes—including psychological ones—for the whole family. A framework for legal, clinical and ethical practice in circumstances where a poor prognosis is expected has been published by the Royal College of Paediatrics and Child Health.4
Table 2 outlines the basic principles for perinatal palliative care and our findings.
Table 2Proposed framework for perinatal palliative care service
Most babies with lethal abnormality were liveborn when the parents continued the pregnancy, in keeping with recent American experience.5
Our series shows the variable and unpredictable postnatal course of these babies, ranging from immediate neonatal death to survival for several weeks.
Experience of practising palliative care for babies with lethal abnormalities is limited, in part owing to the difficult nature of these problems and their relative rarity. In our experience, those parents who chose this model of care gave positive feedback about their decision and the care provided. Professional organisations and specialist societies are best placed to develop how obstetricians, paediatricians and other health professionals can develop this practice. With dedicated resources, guidelines and training, and an agreed framework for practice, more parents could benefit from perinatal palliative care as an alternative to termination of pregnancy.