Delayed Early Pregnancy Screening in Northern Ireland Causes Distress, Experts Say

Gynaecology specialists assert that pregnant women in Northern Ireland experience unequal treatment due to the absence of early screening for foetal abnormalities. Such early screening, which identifies conditions including Patau, Edwards’, and Down’s syndrome, is standard practice across the remainder of the UK. Multiple patients who reached out to BBC News NI recounted the distress they endured when their “non-viable” pregnancies were not identified until approximately 20 weeks. In Scotland, Wales, and England, all pregnant women are provided with antenatal screening for anomalies during the first trimester, specifically between 11 and 13 weeks. The Royal College of Obstetrics and Gynaecology (RCOG) stated that foetal abnormalities in women in Northern Ireland are diagnosed “too late,” and these women should not be required to wait until their 20-week scan. This initial screening test involves a combination of a blood test and an ultrasound scan. The test indicates a high probability that the foetus may be affected by one of the three conditions: Patau, Edwards’, or Down’s syndrome. Subsequently, affected women are offered further screening, which may include a blood test known as Non-Invasive Prenatal Testing (NIPT), or an invasive diagnostic procedure like amniocentesis. As an alternative, a woman has the option to decline any additional testing. A couple reported choosing a termination after their foetus was diagnosed with multiple anomalies during their 20-week scan. The woman was actually over 21 weeks pregnant before treatment could be administered. The couple, whose identities remain protected upon their request, characterized the experience as a “lonely time that they wish on no-one else.” “Sarah,” a pseudonym, stated that her family and friends thought she had miscarried at 20 weeks. She explained, “We did not feel comfortable telling family and friends about the horrendous situation we had found ourselves in, and the impossible choice we had to make for fear of being judged.” She added, “Choosing to end a very much wanted pregnancy is a horrendous situation to be in and an unthinkable choice no matter how far along you are.” Sarah further commented, “We believe had we been in the position to do so earlier in the pregnancy it would have been a lot less traumatic both emotionally and physically.” She also mentioned that terminating a pregnancy causes “mental torture that babies born within the second trimester can and do survive.” Another woman, identified as “Emily” (not her actual name), described it as “devastating” that she could have been informed about the “fatal anomaly” sooner. She stated, “The lack of screening meant we were allowed to believe everything was fine and sleepwalk into a situation where I was clearly pregnant to all of those around me.” Emily explained, “It was not until a year after our loss that we learned there was a discrepancy between the care in Northern Ireland and mainland UK.” When 21 weeks pregnant, Emily indicated that the sole available choice was to undergo medical induction of labour to terminate a non-viable pregnancy. She commented, “As someone who had never given birth before, it was traumatic, painful, and scary in those circumstances.” She further added, “Being given no option but labour at 21 weeks is a different proposition entirely to being given the sad news with options at 12 weeks.” A new framework governing abortion services in Northern Ireland, developed by the Northern Ireland Office, became effective in March 2020. This framework also eliminates time limits for terminations in cases where there is a “substantial risk” that a foetus would experience a severe mental or physical impairment. The RCOG has advocated for earlier scans, and some medical professionals contend that women in Northern Ireland are facing “discrimination.” Dr. Caitriona Monaghan, a consultant in maternal foetal medicine, stated that a late diagnosis during the 20-week scan influences how women opt to manage their pregnancies. Dr. Monaghan, a member of the RCOG, commented, “It limits access to care, including palliative care; it limits what decisions they can make and, as it comes at a later stage in their pregnancy, it puts them under time pressure to make decisions.” She added, “It also affects a woman’s physical and mental well-being.” Dr. Monaghan further noted that screening extends beyond merely identifying genetic conditions. She elaborated, “It’s about screening for important conditions such as preeclampsia which can affect both mums and babies from an early stage in pregnancy.” Dr. Fiona Bloomer of Ulster University observed that significant stigma persists in Northern Ireland concerning abortion, which hinders couples and families from openly discussing their experiences. Dr. Bloomer, who has participated in academic research on foetal abnormalities, identified funding for earlier screening as the primary impediment. She stated, “I am hopeful that the Department of Health will take a stance, I think they will see the need for earlier screening to be made available – the issue will be when they commit the budget to it.” The Department of Health confirmed that official guidelines in Northern Ireland stipulate that scans for detecting abnormalities are conducted solely during the second trimester. The department indicated that work is “ongoing” to determine the resources and timeframe necessary to implement recommendations for “first trimester antenatal screening for foetal anomalies and inherited conditions.” It further stated that once this information is gathered, it will be reviewed by the Northern Ireland Screening Committee prior to the formulation of future policy decisions.