Pregnant women in Northern Ireland are facing discrimination due to the lack of early screening for fetal abnormalities, according to gynecology experts. While early screening for conditions such as Patau, Edwards’, and Down’s syndrome is routine in the rest of the UK, many women in Northern Ireland report distressing experiences stemming from late diagnoses.
Several patients have shared their traumatic stories with BBC News NI, recounting how their “non-viable” pregnancies were not detected until approximately 20 weeks. In contrast, antenatal screening for anomalies is typically offered to all pregnant women in Scotland, Wales, and England during the first trimester, specifically between 11 and 13 weeks.
The Royal College of Obstetrics and Gynaecology (RCOG) has criticized the current system in Northern Ireland, stating that women are diagnosed with fetal abnormalities “too late” and should not be forced to wait until their 20-week scan.
Understanding First Trimester Screening
First trimester screening consists of a blood test combined with an ultrasound scan, which can indicate a high likelihood that a fetus may be affected by one of the three aforementioned conditions. Women identified as at-risk can choose to undergo further screening, such as Non-Invasive Prenatal Testing (NIPT) or invasive tests like amniocentesis. Alternatively, some women may opt not to pursue additional testing.
One couple recounted their “lonely” journey after deciding to terminate their pregnancy following a diagnosis of several anomalies at the 20-week scan. The woman was over 21 weeks pregnant before she could access treatment. Requesting anonymity, the couple described their experience as a time they would not wish on anyone.
Sarah, not her real name, explained that their family and friends believed she had miscarried at 20 weeks. “We did not feel comfortable telling family and friends about the horrendous situation we found ourselves in and the impossible choice we had to make for fear of being judged,” she said. “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. We believe that had we been able to make this decision earlier, it would have been far less traumatic, both emotionally and physically.”
Emily, another woman who shared her experience, found it “devastating” to realize she could have learned about the “fatal anomaly” earlier. “The lack of screening meant we were allowed to believe everything was fine, sleepwalking into a situation where I was clearly pregnant to all those around me,” she said. After her loss, Emily learned about the disparities in care between Northern Ireland and the rest of the UK. At 21 weeks pregnant, she faced the traumatic experience of being medically induced to terminate a non-viable pregnancy. “Being given no option but labor at 21 weeks is a different proposition entirely than being given the sad news with options at 12 weeks.”
Calls for Change
In March 2020, a new framework for abortion services in Northern Ireland was introduced, allowing for terminations without a time limit when there is a “substantial risk” that a fetus would suffer severe mental or physical impairments. However, the RCOG has reiterated the need for earlier screenings, with some medical professionals arguing that women in Northern Ireland are being “discriminated against.”
Dr. Caitriona Monaghan, a consultant in maternal-fetal medicine and RCOG member, noted that late diagnoses at the 20-week scan hinder women’s ability to manage their pregnancies. “It limits access to care, including palliative care, restricts decision-making options, and places women under time pressure to make difficult choices, all of which negatively affect their physical and mental well-being,” she stated.
Dr. Monaghan emphasized that screening goes beyond genetic conditions, addressing critical issues like preeclampsia that can impact both mothers and babies early in pregnancy.
Dr. Fiona Bloomer from Ulster University highlighted the stigma surrounding abortion in Northern Ireland, which inhibits open discussions about such experiences. She expressed hope that the Department of Health would recognize the need for earlier screenings, although she noted the challenge of securing funding.
The Department of Health confirmed that current guidelines in Northern Ireland only allow for scans to detect abnormalities during the second trimester. The department stated that work is ongoing to determine the requirements for introducing first trimester antenatal screening for fetal anomalies and inherited conditions. Once the necessary information is collected, it will be reviewed by the Northern Ireland Screening Committee before any policy changes are made.
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