March 21st marks World Down Syndrome day which, this year, calls on governments to improve support for those with Down syndrome, parents and families. The charity Positive about Down syndrome shares how Nicola Enoch turned her experience of life with Tom into creating the charity to support others.
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When Nicola’s son Tom was just 24 hours old and she was advised he has Down syndrome, the maternal bond of unconditional love she felt for him was severed, and she faced despair, devastation and rejection.
“I struggled enormously,” she admits. “Having been on top of the world, feeling euphoric that my family was now complete, I fell to the depths of despair. I was overwhelmed with fear, grief, and guilt. We considered having Tom adopted and initially left the hospital without him, not being able to see past the diagnosis and the perceived associated negativities.”
Nicola is not alone in feeling this way. Many parents, on hearing their baby has Down syndrome, experience a wave of emotions—shock, sadness, fear of the unknown. But what Nicola didn’t know at the time was just how much love and happiness Tom would bring into her life.
“I wish I could go back and tell myself that it was going to be okay,” she reflects. “Better than okay. That Tom would bring more love, joy and pride than I ever imagined.”
But at the time, the future felt uncertain. And much of that, she realises now, was due to the way Down syndrome was presented to her—through outdated, negative, and clinical language. “The professionals didn’t know how to respond, they questioned my screening results – inferring had I known Tom has Down syndrome that he wouldn’t be here, and all the information was bleak,” she explains. “It was all about what Tom wouldn’t be able to do, rather than what he potentially could do.”
That experience, painful as it was, would eventually lead Nicola to create Positive About Down Syndrome (PADS)—a charity dedicated to ensuring no other parent feels as lost, alone, or unsupported as she once did.
A Lonely Beginning
In those early days, Nicola found herself desperately searching for information, looking for hope and an understanding of what their lives may look like. “I needed to hear from and connect with other parents, to know that life with Tom would be good. But what I found was overwhelmingly negative.”
She was given leaflets filled with outdated medical statistics, offered condolences rather than congratulations, and she was left with the sense that her family’s life would never be the same again.
“But then I started to realise that Tom had the same needs as his then four-year-old sister Emily—to be fed, watered, and loved. While we had additional appointments, Tom did not have any significant health needs. With the right support and knowledge, I discovered that most children with Down syndrome can make great progress, learning to walk, talk, read, and write. As I immersed myself in understanding Tom’s development, I also recognised the need to connect with other families – something that is fundamental to PADS. Most importantly, I began to see Tom for who he truly was and so the grief gave way to love, the fear to hope, and I fell back in love with my fun-loving, cheeky and handsome baby boy.”
But she never forgot how hard those first months were, or how different things could have been if she had been given the right information and support from the start.
Creating PADS: Changing the Narrative
Determined to ensure other parents had the information and support she had once craved, Nicola created Positive About Down Syndrome (PADS), and then national charity Down Syndrome UK.
“I wanted expectant and new parents to know that it’s okay to struggle, to grieve, to feel overwhelmed. But more than that, I wanted them to know that life with their child would be full of love, laughter, and possibilities.”
Through its website and social media, PADS provides real stories from real families—not medical jargon or outdated stereotypes, but honest, everyday accounts of life with a child with Down syndrome.
“We share the highs and the challenges,” Nicola explains, “because that’s real life. But above all, we show that a Down syndrome diagnosis is not the end of the world—it’s the start of a different, but equally wonderful journey.”
PADS has grown into a vital support network, offering online communities, expert-led resources, and guidance for expectant and new parents. “We now support thousands of families across the UK,” Nicola says, “and I am immensely proud of the positive difference we make to our families.”
Supporting Maternity Professionals
Nicola is particularly passionate about improving the way Down syndrome is discussed in maternity care. “The way a diagnosis is delivered can strongly impact how a parent feels,” she says.
Through training sessions for midwives, sonographers, and other professionals, PADS is helping to challenge the narrative and change the conversation.
“Parents tell us all the time that they felt as if they were being given bad news, rather than celebrating the arrival of their baby,” Nicola says. “We work with maternity teams to ensure they understand the impact of their words and the importance of balanced, up-to-date information. Our training highlights the impact of referring to the likelihood of having a baby with Down syndrome as a ‘risk’ instead of a chance and ensuring health care professionals have a contemporary understanding of the condition. We advocate for the use of genetic condition instead of disorder, chromosomal difference instead of abnormality and for professionals to consider that they are sharing different/unexpected news instead of breaking bad news. Small differences can make a big impact. We believe language reflects attitudes and impacts behaviour, so it’s very important that those professionals working with our families check their own attitudes and any unconscious or indeed conscious bias they may have towards those with Down syndrome.”
The Royal College of Midwives has worked with Down Syndrome UK/PADS to create a suite of i-learning modules including Down syndrome: the importance of language, Down syndrome: care and considerations about Down syndrome and a module on breastfeeding a baby with Down syndrome.
Looking Back, Moving Forward
Now, twenty years after those difficult early days, Nicola sees things so clearly. “I look at Tom and wonder how I ever considered that our lives would be better without him in it. He’s a kind, considerate, and easy-going young man who is jolly good company. He has recently qualified as a fitness coach, is about to move out and is on the lookout for a girlfriend! He enriches our lives every single day.”
Her hope is that PADS continues to reach more families, ensuring every parent feels supported and every child with Down syndrome is valued for who they are. DSUK has grown to providing support beyond the early years to working with more than 5,000 families across the UK and delivering training to education settings too.
For new and expectant parents, her message is simple: however you are feeling, you are not alone. “It’s okay to be scared, to feel lost, to take time to adjust. But I promise you—your child will bring you more love than you ever imagined. And we are here for you, every step of the way.”
Through Tom, PADS, and the thousands of families it now supports, Nicola has turned her own struggle into something extraordinary – helping to build a world where the birth of every child, with Down syndrome is celebrated.
For information about PADS resources and training please contact healthcare@downsyndromeuk.co.uk
Lauren Livesey
Down syndrome UK
March 2025