Supporting women with a prenatal diagnosis of Down Syndrome

October is National Down Syndrome Awareness Month and at Life we particularly want to talk about the experiences of women and families expecting a baby and who have had a prenatal diagnosis of a higher chance of Down Syndrome. 

Down Syndrome (sometimes called Trisomy 21 or T21) is a genetic disorder that can cause some health issues. There are many misconceptions about these challenges and what it’s like to live as a person with Down Syndrome or as a loved one. Down Syndrome UK has lots of information about what it really means to live with this condition. 

Being a genetic condition, Down Syndrome is one of the things that are screened for in prenatal examinations. However, misconceptions and subtle social prejudices can cause the people around a woman to feel even more confused and vulnerable when they are told that there is a higher-than-average likelihood of their baby having Down Syndrome. 

Positive about Down Syndrome says, “We too frequently hear of women… being undermined with misleading, disrespectful and directive language used. And all too often the prejudicial personal views being imposed on expectant women.” 

The NHS states on its website that women offered tests with risks associated such as amniocentesis, “do not have to take the test. It’s up to you to decide whether you want it”. Women should always be fully informed of the possible complications and be given the time to really consider what she, personally, believes is best for her and her pregnancy, at a time when shock and disbelief are blurring thoughts. 

Additionally, women are sadly being offered the option to end a pregnancy rather than being given the support they need to form their own thoughts, and before having the chance to really find out what a Down Syndrome diagnosis, if it is confirmed, might mean for them. This is unfair on women and this is one of the reasons we offer our skilled listening and counselling services completely free of charge. 

At Life, we offer the space for independent thinking time, away from medical or family opinions. We provide a non-directive, professionally accredited and entirely non-judgmental skilled listening and counselling service that gives a woman, man or family member who’s had news like this the time to explore their thoughts and feelings fully before making decisions about their next steps. 

This month, we want to specifically bring people’s attention to how we can move from a place of assuming a Down Syndrome diagnosis is something to be feared, into a place of putting the woman’s thoughts and feelings first, and giving her time to understand her situation. 

If you, or someone close to you, has had a prenatal screening including amniocentesis, showing a higher chance of Down Syndrome, we are here for you; the safe space to talk and explore your thoughts and emotions via our free helpline, text or email. We’ll listen to everything you have to say, we’ll never assume or tell you how you should feel, and we’ll be here for you every step of the way. 

Phone: 0808 802 5433
Text: 07860077339
Email: help@lifecharity.org.uk