Posted By: Amy Tubb
11th November 2025
4 minute read
Pregnancy is a unique and precious time, generally filled with joy and anticipation. But for those who receive a high chance screening or diagnostic result for Down syndrome, that experience can quickly become one of anxiety, confusion, and emotional strain.
New research published by the University of Warwick and Down Syndrome UK highlights that the way Down syndrome screening is framed, discussed, and results delivered can have a profound negative effect on women’s emotional wellbeing. More than half of the women in the study went along with screening tests without much thought; many said they did not have enough time to discuss their options, and concerningly, 19% reported feeling pressured into a termination.
As a charity that supports families of children with Down syndrome from the womb and beyond, we are deeply concerned about the disparity in maternal mental health support for women following Down syndrome screening. According to the Care Quality Commission’s 2023 Maternity Survey, 85% of women felt adequately supported during pregnancy, yet among mothers of children with Down syndrome only 34% felt their mental health was supported during pregnancy which reduced to 26% postnatally. This highlights a significant gap in support that future healthcare professionals need to understand and address. Furthermore, 37% felt that the attitudes of health care professionals had a negative impact on their mental wellbeing.
The survey of more than 300 mothers of babies with Down syndrome born between 2019-2022, explored their experiences of prenatal screening, the information they received, how results were communicated, and the emotional support available to them.
The findings reveal significant gaps. Nearly half of the mothers said they were offered no written or online information before screening was discussed. Over a third had no opportunity to speak to a healthcare professional beforehand, and the majority felt that screening was presented as a routine part of antenatal care rather than an optional choice. Almost two thirds said they did not receive enough information to make an informed decision. Many described feeling completely abandoned after receiving their results, particularly when those results were delivered by phone, without any follow-up or guidance.
One mother recalled, “I was called with the results and told I had a one in two chance my baby had Down syndrome. The call ended and I just sat there, completely alone. I didn’t know who to talk to or what to do next."
I was called with the results and told I had a one in two chance my baby had Down syndrome. The call ended and I just sat there, completely alone. I didn’t know who to talk to or what to do next.
Another explained how the negative framing of conversations shaped her experience, “I was offered termination several times, as though that was the only logical option. I wanted to understand what Down syndrome really meant, but no one could tell me.”
These testimonies reveal a system that too often treats screening as a procedural step to an assumed outcome, leaving women unsupported during one of the most vulnerable and important times in their lives.
From a maternal mental health perspective, these findings are deeply troubling. Women described feeling pressured, isolated, and guilty, particularly when communication was abrupt or framed in negative terms. Some were told their baby with Down syndrome would be “a burden” or “wouldn’t have a good quality of life”, words that can leave lasting psychological scars.
As one mother shared, “When you’re already frightened, being told your baby will never walk or talk is devastating. None of it turned out to be true. My son is thriving.”
For many, the distress and confusion experienced during screening lingered long after birth, shaping their adjustment to motherhood. Feelings of anxiety, regret, and mistrust were common, all pointing to a lack of emotional and psychological support at a crucial stage in the perinatal journey.
These experiences show that compassionate, knowledgeable communication about Down syndrome is not an optional extra, it is central to good maternal mental health care.
This research reinforces that prenatal Down syndrome screening must be delivered in a way that safeguards both informed choice and emotional and mental wellbeing.
As a charity that champions lived experience, Down Syndrome UK is calling for mandatory training for maternity and prenatal professionals that emphasises the importance of language, tone, and empathy. Professionals must have an up to date understanding of life with Down syndrome and the realities experienced by families, not outdated stereotypes or assumptions.
We are already working to close these gaps. Down Syndrome UK provides training for healthcare professionals on inclusive and empathetic communication based on the lived experience of families of children with Down syndrome. We have also developed an antenatal care pathway together with St George’s NHS Hospital trust for continuing your pregnancy when Down syndrome is suspected and detected which not only has clinical recommendations but also outlines the importance of language as the potential need for emotional and compassionate support.
In addition, DSUK has collaborated with the RCM to produce two iLearn coffee time modules on Down syndrome, Compassionate Consideration and Breast Feeding a Baby with Down Syndrome.
We work hard to amplify the voices of families with lived experience, ensuring their insights shape professional training, policy reform, and national standards. Our goal is simple: that every expectant and new parent receives the information, care and support that they need and deserve.
Prenatal screening is not just a medical test, it is an emotional journey that sits at the heart of maternal mental health. As one mother in our research reflected, “What I needed most was kindness, honesty, and space to think. Instead, I felt rushed and judged.”
Supporting women through this process is not simply about providing information, it is about treating parents with dignity, compassion, and care.
Together, policymakers, healthcare professionals, and advocates can ensure that every expectant mother feels supported, not pressured; informed, not isolated; and respected in every decision she makes.
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