Credit score: Antoni Shkraba from Pexels
Prenatal screening for Down syndrome (DS) is obtainable to all pregnant folks receiving antenatal care in Nice Britain, with the purpose of offering related neutral data to assist their reproductive choices, however the experiences of fogeys of kids with Down syndrome of present process screening are not often captured intimately.
Printed within the American Journal of Medical Genetics Half A, a research from the U.Okay. has revealed severe gaps in the best way expectant moms are supported by way of prenatal screening for Down syndrome. The findings present that many have been left to navigate overwhelming choices with out ample data, dialogue or emotional assist.
The research surveyed greater than 300 moms of kids with Down syndrome to evaluate the data they acquired about screening, their experiences of being supplied screenings and receiving screening outcomes or of declining screenings.
Screening was seen as a routine a part of antenatal care regardless of being elective, with 83% of moms having this impression and 54% of moms reporting that they “went along with” preliminary screening with out giving it a lot thought. 73% reported not feeling pressured regardless of the routinization, however a minority nonetheless felt pressurized to have screening.
Experiences have been removed from all adverse, as the bulk (85%) understood the screening was elective, 79% understood that the non-invasive prenatal screening check (NIPT) couldn’t positively affirm that their child had DS, and 72% reported having sufficient time to determine whether or not to have a screening check. A number of moms highlighted the wonderful conversations that they had had with well being care professionals.
Natalie and Henley’s story beneath echoes the broader findings of the research as not all their experiences have been adverse: A neurosurgeon at Birmingham Kids’s Hospital reassured the couple that most of the earlier predictions couldn’t be recognized till after delivery, and maybe not for years.
Natalie, whose son Henley was born in 2021, described the being pregnant as “so stressful, with so much negativity, doom and gloom.” She acquired a excessive likelihood consequence for Down syndrome at 13 weeks. Over the course of her being pregnant, she was supplied termination on 4 separate events—typically within the absence of balanced data or compassion.
“The fetal drugs physician instructed us our child would have a poor high quality of life and that we must always contemplate the impression on our household. They instructed us he can be a burden. Henley is now 14 months outdated. He is already defied so most of the predictions. He did not want any air flow, and we went residence 5 days after delivery.
“The fetal medicine doctor kept telling us that because of having Down syndrome and severe fluid on the brain our son would be severely disabled, that he would be wheelchair bound and have very low mobility. He also advised Henley would have cerebral palsy. We were told to expect him to come out and need ventilation and to prepare ourselves for making the decision about turning it off.”
At 23 weeks, Natalie was instructed about late-term abortion procedures “in detail” and that it will be “better to do it sooner rather than later.” When Henley was born, he didn’t want particular care, he didn’t require air flow or any surgical procedure and had no indicators of cerebral palsy.
“Hearing his first cry, the relief just washed over me—it was already more positive and brighter than we’d been told,” says Natalie.
Henley is celebrating his 4th birthday this week, he’s cellular, loves enjoying together with his two brothers, and mother Natalie says she will’t think about life with out him.
“We are prepping to take him to the Paddington experience in London as a surprise. His birthdays are so special to us as we celebrate the fact he is here proving medical professionals wrong in every sense possible. It’s always a celebration of how our family has come so far from such a negative experience, and it is just pure joy, happiness, and love to celebrate together.”
Sadly, Natalie’s story echoes the broader findings of the research, which spotlight how screening outcomes are sometimes framed negatively, and the way little assist many ladies obtain. Lower than half got written or on-line details about screening earlier than it was supplied, and a few mentioned the potential of persevering with the being pregnant was not meaningfully mentioned.
At Birmingham Ladies’s Hospital, ladies repeatedly report how supportive the screening midwife is.
Extra data:
Tamar Rutter et al, Down Syndrome in Maternity Care: Moms’ Experiences of Prenatal Screening, American Journal of Medical Genetics Half A (2025). DOI: 10.1002/ajmg.a.64206
Supplied by
College of Warwick
Quotation:
Many UK moms report lack of assist throughout Down syndrome prenatal screening (2025, August 13)
retrieved 14 August 2025
from https://medicalxpress.com/information/2025-08-uk-mothers-lack-syndrome-prenatal.html
This doc is topic to copyright. Other than any honest dealing for the aim of personal research or analysis, no
half could also be reproduced with out the written permission. The content material is supplied for data functions solely.
