In 2027, SOFT UK will be embarking on an ambitious new project to bring the lived experiences of families affected by Trisomy 13 and Trisomy 18 to the forefront of conversations around diagnosis, healthcare and life beyond a medical prognosis.
At SOFT UK, we understand the power of stories. They can challenge assumptions, build understanding and offer perspectives that statistics alone cannot capture. For families affected by Trisomy 13 (Patau’s syndrome) and Trisomy 18 (Edwards’ syndrome), sharing those stories can also help others feel less alone and give healthcare professionals a deeper understanding of the experiences families face.
That is why we are developing our new Compatible With Life campaign: a project that will bring families’ voices to the forefront and encourage a wider conversation about the language used around Trisomy 13 and Trisomy 18, the impact of diagnosis, and the diverse experiences that follow.
Challenging the phrase “incompatible with life”
The phrase “incompatible with life” is one that many families encounter when receiving a diagnosis of Trisomy 13 or Trisomy 18. It is a phrase that can carry enormous weight, shaping how parents understand their child’s condition, what they expect from the future and how they experience the moments surrounding diagnosis.
We recognise that healthcare professionals must communicate complex medical information, including the serious health challenges and uncertainties associated with these conditions. Honest, compassionate conversations are essential, and families deserve accurate information to help them make decisions that are right for them.
However, we also believe there is a need to consider the language used during these conversations and the impact it can have.
A diagnosis provides important medical information, but it cannot fully describe an individual child, a family’s experience or the meaning that life will hold for them.
Our campaign takes the phrase “incompatible with life” and challenges us to look again. By crossing out the “In”, we reveal the words “Compatible With Life”.
This is not about denying the medical realities of Trisomy 13 and Trisomy 18, dismissing the experiences of bereaved families or suggesting that every family’s journey will be the same. It is about making room for the full picture: the uncertainty, the challenges, the grief, the joy, the relationships, the memories and the individual experiences that sit behind a diagnosis.
Above all, it is about listening to families.
Bringing family stories to life
Throughout 2027, we plan to work with families across the UK to capture their experiences through a series of documentary-style films.
Our Charity Director, Shaun Dowdall, will be working alongside Liam Nicoll, our volunteer videographer, to visit participating families in their homes and communities. By filming in familiar surroundings, we hope to create a relaxed environment where families can share their experiences in their own words.
Rather than simply asking families to sit in front of a camera and answer questions, we want to capture the reality of their lives: the everyday moments, the experiences that have shaped them, the things they wish others understood and the memories they want to share.
Every family has a different story. Some families may speak about receiving a prenatal diagnosis and navigating pregnancy. Others may share their experiences of welcoming a baby, caring for a child with complex medical needs, celebrating milestones, navigating healthcare or living with bereavement.
We want to represent a range of experiences, recognising that there is no single story that can represent every family affected by Trisomy 13 or Trisomy 18.
The films will be documentary-style portraits of individual families, giving each story the space it deserves. We will also bring elements of these experiences together into a longer campaign film, alongside shorter informational videos that can be used to support awareness, education and discussion.
Our aim is to create something that goes beyond a collection of videos. We want to build a lasting resource that helps people understand the lives and experiences behind a diagnosis.
Putting lived experience alongside healthcare education
One of the main aims of Compatible With Life is to share these stories with healthcare professionals.
Families often remember the words spoken at diagnosis for the rest of their lives. The way information is communicated can influence how parents understand their child’s condition, how supported they feel and how they approach the decisions ahead.
Medical knowledge is essential, but lived experience can offer a different and equally important perspective. Hearing directly from families can help professionals reflect on the language they use, understand the lasting impact of conversations and recognise the individuality of the people and families they support.
This campaign is not about blaming healthcare professionals or suggesting that difficult conversations can ever be easy. It is about creating opportunities for reflection, learning and better understanding.
We want the films to help professionals consider questions such as:
What might a family hear when they are told their baby is “incompatible with life”?
How can we communicate serious medical information honestly while recognising uncertainty and individual experience?
What can families teach us about the impact of language at the point of diagnosis?
How can we ensure parents feel heard, respected and supported throughout their journey?
Alongside the individual films, we intend to create a longer documentary and a collection of supporting resources that can be used in healthcare professional education, training sessions, conferences and discussions within healthcare settings.
We also hope to reach students and those preparing for careers in maternity care, neonatology, paediatrics, genetics and other relevant fields, helping ensure that lived experience is part of the conversation from the beginning of their professional journeys.
Ultimately, we want families’ experiences to help inform not just what people know about Trisomy 13 and Trisomy 18, but how they communicate with the families affected by them.
Bringing stories to the wider public
Although healthcare professional education is a central part of the campaign, we also want these stories to reach the wider public.
Trisomy 13 and Trisomy 18 remain conditions that many people know little about until they or someone close to them is affected. Public understanding can be shaped by headlines, statistics and assumptions, without much opportunity to hear directly from families.
By sharing real experiences, we hope to encourage more informed and compassionate conversations about these conditions and the lives of the people affected by them.
We will also explore opportunities to work with local and regional media in the areas where participating families live. Local stories can help connect communities with experiences they may never otherwise encounter, while giving families an opportunity to share what matters to them with a wider audience.
Any additional media involvement will be discussed with families individually. Taking part in a documentary will not mean a family is automatically expected to participate in interviews or other publicity.
Protecting the people behind the stories
We know that sharing a personal story publicly is a significant decision.
Once a film is published online, it may reach audiences far beyond those originally intended. Content may be shared by other organisations, reposted on social media or referenced by the media. While SOFT UK can take care over how we publish and promote the films, we cannot control every instance of third-party sharing or how content may be used elsewhere.
For that reason, the wellbeing and wishes of participating families will remain central throughout the project.
Before filming, families will receive information about the campaign, how their stories may be used and the potential reach of public content. We will encourage families to consider what they are comfortable sharing, including personal, medical and family information, and to set boundaries around subjects they would prefer not to discuss.
Families will be able to tell us when a question feels uncomfortable or when they would rather something was not included. Where appropriate, we will provide an opportunity to review an individual film before publication and raise any concerns.
We also recognise that experiences and feelings can change over time. We want families to feel supported throughout the process, not simply during filming.
The family comes before the campaign. Our responsibility is to create a respectful space for people to share their experiences on their own terms, without pressure to make their story fit a particular message.
Helping the campaign reach further
To make this project possible, we will be seeking support from individuals, organisations and our wider community.
Although Shaun and Liam will undertake the filming, there are still costs involved in travelling across the UK and bringing the finished content to life. Donations will help cover travel and accommodation where needed, production expenses, editing, captions and accessibility, campaign materials and the promotion and distribution of the films.
Support will also help us make the finished resources available to the people who can benefit from them, including healthcare professionals, families and organisations working with rare conditions.
We want to build a campaign that has a life beyond its initial launch: a resource that SOFT UK can continue to share, use in education and draw upon as we work to improve understanding of Trisomy 13 and Trisomy 18.
If you would like to donate to this project, please visit: https://www.justgiving.com/campaign/compatiblewithlife
Every donation will help us to reach more families and capture more experiences on video.
A conversation that starts with listening
We are still in the planning stages, and there is much to do before the cameras begin rolling. Over the coming months, we will be developing the project, working with families and preparing the resources needed to make the campaign as meaningful and accessible as possible.
We are excited about what this project could achieve, not because one campaign can change every conversation, but because we believe that listening to families is an important place to start.
Every story will be different. Every family will bring their own experiences, hopes and perspectives. Together, those voices can help build a fuller understanding of what it means to live with, and be affected by, Trisomy 13 and Trisomy 18.
Because behind every diagnosis is a person. Behind every statistic is a family. And behind every phrase are real people whose experiences deserve to be heard.
Compatible With Life: helping change the narrative, one story at a time.
Keep an eye on the SOFT UK website and social media channels for further updates as we develop the campaign.
If you would like to register your interest in taking part in this campaign, please complete the form linked here: https://forms.monday.com/forms/b4d6c3fe37c8b1ddcde73c40a85e4c71?r=euc1