Podcasts

SOFT UK podcasts

We have produced 5 series of podcasts with SOFT UK families. Each tells a personal story of their experience of Trisomy 13 or 18. The conversations range in subject matter from bereavement, ending a pregnancy, continuing a pregnancy after diagnosis, fundraising, a dad’s perspective, and living with Trisomy.
We are so grateful to all the individuals who took part in this series of insightful and honest podcasts. If you would be interested in sharing your story on our podcast, please email kate.hart@soft.org.uk

SERIES 5: TRISOMY AWARENESS MONTH

In celebration of Trisomy Awareness Month 2022, we put together 5 podcasts covering various topics.

Episode 5: Empowering Hope

We spoke to an amazing couple, Sarita and Kareem Edwards about their incredible 5 year old son, Elijah with full Trisomy 18. It's an inspirational way to end off #TrisomyAwarenessMonth as he is so well for a child with this condition. The podcast includes an endearing guest appearance by Elijah himself. It's also a wonderful opportunity to hear from a Dad when we discussed how this diagnosis affected them as a couple. It's all summed up with their message of hope and love at the end. Listen here: https://anchor.fm/softuk/episodes/Trisomy-Awareness-Month-Empowering-Hope-e1gh742/a-a7m32k2

Episode 4: Gareth, a trustee and fathers perspective

This conversation with Gareth is an important one, as we hear how Dads can be affected by baby loss. His daughter, Phoebe, lived for 3 days and he found it terribly difficult to deal with at the time. His involvement with SOFT began by running sponsored races to raise funds for SOFT and has evolved to him 'meeting and greeting' people at SOFT conferences and now as a Trustee. We value his involvement and it's interesting to hear how SOFT has changed in the time he has been involved. Listen here: https://anchor.fm/softuk/episodes/Trisomy-Awareness-Month-Talking-with-Gareth--a-trustee-and-fathers-perspective-e1fdevc/a-a7ho3lh

Episode 3: Juliette, from a trustee and volunteer's perspective

We spoke to Juliette about her personal journey with her daughter, Amelia, who had Trisomy 18. It's touching to hear how she has both relied on SOFT for support and now provides it as a support volunteer and trained bereavement counsellor. It's truly a labour of love for the Bradley family, as Juliette's husband, Matt, helps SOFT with their website and IT. Listen here: https://anchor.fm/softuk/episodes/Trisomy-Awareness-Month-Talking-with-Juliette--a-trustee-and-volunteer-perspective-e1fc2d7/a-a7hig4u

Episode 2: Founding member of SOFT UK

We heard from Jenny Robbins, how SOFT was started back in the 1980s in the context of limited/ outdated information on Trisomy 13 and 18. Listening to how connections were made locally and overseas with other families with Trisomy 13 and 18 babies and children, through surveys and letters, was so interesting. We found out about the very first conferences and how the support that SOFT offers has changed with the advent of technology. Listen here: https://anchor.fm/softuk/episodes/Trisomy-Awareness-Month-Interview-with-Jenny-Robbins--a-founder-of-SOFT-UK-e1fbthi/a-a7hi0r1

Episode 1: Verity's Village

We had a catch up with Beverly Jacobson in the States to hear how her daughter Verity, with Trisomy 18 is; what's new with Verity's Village since we last spoke and how the launch of her book 'From Diagnosis to Delivery' is doing as well as what her plans for Trisomy Awareness month are. We also shared all the exciting things SOFT UK have planned for the month of March to celebrate #TrisomyAwarenessMonth. Listen here: https://anchor.fm/softuk/episodes/Trisomy-Awareness-Month-Veritys-Village-e1f63f3/a-a7gqv8r

SERIES 4: BEREAVEMENT

We have noticed that our community really comes together for each other, especially at the time of a loss. It's fantastic that there is this empathetic support from peers and because SOFT UK always has been here for you, every step of your journey, we decided to do a podcast series on the difficult subject of Bereavement. Join support volunteers, Hannah and Chloe as they talk about their darling babies/ children. We also welcome anyone who would like to tell their story to come forward.

Episode 6: Other Peoples Reactions

Today we talk about the difficult subject of how other people handle the loss of your baby. Hannah shares some of the strange things that people have said to her, sometimes out of panic as they don't know what else to say, and the impact that this had on her. Listen here: https://anchor.fm/softuk/episodes/Bereavement-Other-Peoples-Reactions-e1en772/a-a7f24vm

Episode 5: The Impact on Relationships

In this podcast we spoke with Hannah. We discussed what impact losing her son Cillian had on Hannah's marriage and other significant relationships in her life. It was interesting to hear how she has changed as a person and how this has had an effect on others around her. Listen here: https://anchor.fm/softuk/episodes/Bereavement-The-Impact-on-Relationships-e1ec922/a-a7dbb7e

Episode 4: Ways of coping

We spoke to Hannah about some of the coping mechanisms she has developed since losing her son Cillian. Some are the usual things we've all heard of before, but one is rather unusual and was even surprising to her. Listen here: https://anchor.fm/softuk/episodes/Bereavement-Ways-of-coping-e1e3rcr/a-a7cabqr

Episode 3: Chloe's Story

We spoke to Chloe about her daughter, Penelope, whose Trisomy 18 diagnosis was missed during pregnancy, but who lived for 2,5 years. The months and years that followed her loss were extremely tough and there were times when she didn't know how she or her husband would make it through. She bravely explains how she has since been diagnosed with Complex PTSD and is seeking help with a psychologist. Hear more about her journey and what she has done for SOFT UK in Northern Ireland. Listen here: https://anchor.fm/softuk/episodes/Bereavement-Chloes-Story-e1dmsso/a-a7as2pc

Episode 2: Loss During Lockdown

We spoke to Hannah about the difficulties of experiencing loss during lockdown and how she managed to plan her baby's funeral despite all the restrictions. She speaks beautifully about the ways in which they still made the event special and kept traditions that meant a lot to their family. Listen here: https://anchor.fm/softuk/episodes/Bereavement-Loss-During-Lockdown-e1d5fo2/a-a78rr35

Episode 1: Introduction

We spoke to Hannah O'Gallachoir about her antenatal diagnosis of baby Cillian's condition, Trisomy 13. We discussed how she found out about SOFT and why she loves volunteering for us as a support line volunteer. Hear more about her journey as well as her message for other bereaved families here: https://anchor.fm/softuk/episodes/Bereavement-Hannahs-Story-e1d2hib

SERIES 3: ‘THE RIGHT CHOICE FOR YOU’

This series of stories focuses on the difficult decision families have made to end their pregnancy, giving a voice to those who can often feel silenced. It is so important to us as a support organisation, that we represent stories about Ended Pregnancies as everyone’s journey is equally important and we respect everyone’s choices. We hope that this will go some way to breaking down barriers.

Episode 4: Emma's story

We spoke to Emma Belle, mum to Willow and founder of support group, TFMR Mamas. She spoke openly about their IVF journey, and how they heartbreakingly discovered that the baby she was carrying had Trisomy 18. Listen to her powerful message at the end about finding safe spaces to express yourself and find support. Listen here: https://anchor.fm/softuk/episodes/The-Right-Choice-for-You-Emmas-Story-e1e2a5i/a-a7c50la

Episode 3: Naomi’s story

She was very open about her experience, from discovering the issues during the pregnancy, to why she made the decision, to the end of the journey including funeral arrangements for her baby, Paige. She felt it was important to tell her story as there were no others around like it when she was going through the same thing.
Listen here: https://anchor.fm/softuk/episodes/The-Right-Choice-for-You-Naomis-Story-e1bq1cf/a-a73u63m

Episode 2: Rachel’s story

We speak to first time Mum, Rachel, about when she discovered problems during the routine screening offered in pregnancy. She tells us how she came to the decision and what impact that has had on her life since.
Listen here: https://anchor.fm/softuk/episodes/The-Right-Choice-for-You-Rachels-Story-e1bk0ak/a-a733kth

Episode 1: Caroline’s story

It’s a brave conversation with Caroline, who discusses all the considerations in making the extremely difficult decision to end her pregnancy. We hear about the emotions and thoughts she experienced afterwards and how she has coped over since losing her son, 7 years ago. Listen here: https://anchor.fm/softuk/episodes/The-Right-Choice-for-You-Carolines-Story-e1b36ej/a-a70omdh

SERIES 2: ‘AGAINST ALL ODDS’

This series features stories from families with different experiences and outcomes. Prepared to be inspired!

Episode 8: Helen’s story

Helen is expecting a baby girl in 2022 with Trisomy 18, and we chat about the diagnosis, their uncertainty around continuing the pregnancy or not, as well as the added complications of having older children. We also hear how joining the monthly SOFT support calls helped to normalise some of the feelings she was experiencing.
Listen here: https://anchor.fm/softuk/episodes/Against-All-Odds-Helens-Story-e1bu9pe/a-a74frjo

Episode 7: Chelsea’s fundraising

Chelsea Fenwick undertook fundraising in memory of her daughter Esme. She raised an incredible £10 000, and we hear more about her journey with her beautiful daughter and some of the milestones they shared along the way. Listen here: https://anchor.fm/softuk/episodes/Against-All-Odds-Chelseas-Fundraising-e1b346a/a-a70odg2

Episode 6: Leo’s fundraising

We chat to Mum, Lucinda about her fundraising walk for her son, Leo. As well as another fundraiser that was set up at very short notice by an amazing organisation. She also updates us on the progress made with finding a treatment for his ultra-rare condition. Listen here: https://anchor.fm/softuk/episodes/Against-All-Odds-Leos-Fundraising-Walk-Around-the-World-e1avdd8/a-a708i6t

Episode 5: Ben’s fundraising story

Ben ran the London marathon in October 2021 for SOFT UK in memory of his baby who had Trisomy 18 and passed away during pregnancy in March 2019. He raised £2,825.45 for the cause and this is his story: https://anchor.fm/softuk/episodes/Against-All-Odds-Bens-Fundraising-e1afaru/a-a6u3r5o

Episode 4: JamJam’s story

Listen to Mum, Serena, tell Jam Jam’s incredible story. She turned an upsetting situation into something hopeful and positive by writing the book: “JamJam Can!” to change perceptions and educate children about disabilities and being ‘different’. Listen here: https://anchor.fm/softuk/episodes/Against-All-Odds-Jam-Jam-Can-e19ug09/a-a6rqsqc

Episode 3: Lucy’s fundraising

This is Lucy's story of losing baby Albert in August 2016 and how fundraising for SOFT UK became her way of telling his story and giving herself something positive to focus on. An inspirational story from a very strong lady!
Listen here: https://anchor.fm/softuk/episodes/Against-All-Odds-Lucys-Fundraising-e19t132/a-a6rklkr

Episode 2: Verity’s Village

We chat to Beverly, who is Verity's Mum, a 4-year-old girl living in the US with Trisomy 18. Listen to this inspirational story of how she is doing and how their experience has inspired her Mum to set up a charity called 'Verity's Village' which aims to support other families with a prenatal diagnosis of Trisomy 18.
Listen here: https://anchor.fm/softuk/episodes/Against-All-Odds-Veritys-Village-e18un96/a-a6nlbvh

Episode 1: Leo’s story

Leo has been affected by an extremely rare genetic disorder affecting his TBCD gene. He is only the sixteenth child on record in the world to be diagnosed with this specific gene mutation. The TBCD mutation affects his brain, central nervous system and muscles. As a result, he has epileptic seizures and low muscle tone, which means he has difficulty moving and breathing. However, he is responding well to the therapy is receiving, despite having a condition so rare it doesn’t have a name. Listen here: https://anchor.fm/softuk/episodes/Against-All-Odds-Leos-Story-e18un76/a-a6nlbq4

SERIES 1: SOFT UK FAMILY STORIES

Accessible Iris - Enabling Families To Go On Holiday

In this interview we talk to Jemima about her incredible fundraiser 'Accessible Iris'. Jemima and her partner Cody, aim to convert a campervan into something that families with children with complex needs, can use to travel and go on holidays. To find out more, visit their page: https://www.facebook.com/AccessibleIris To help and support, visit: www.crowdfunder.co.uk/accessible-iris
Listen here: https://anchor.fm/softuk/episodes/Accessible-Iris---Enabling-Families-To-Go-On-Holiday-e140mi6/a-a62otnj

Behind the Scenes

In this introductory episode to Behind The Scenes With SOFT UK, we'll be exploring a little more about what this series will involve. Join us on our journey as we build our virtual event, welcoming families from all over, and hear about some of our new and exciting projects we are involved in!
Listen here: https://anchor.fm/softuk/episodes/Behind-The-Scenes-With-SOFT-UK-Introduction-e12nnsk/a-a5sg7rf

Shaun’s Story: The importance of letting it out for Dads

In this podcast episode we join Shaun, our Engagement Officer as he recounts his story and shares the importance of talking about what you're going through. Shaun's daughter Emilia has Mosiac Trisomy, and he shares candidly about the impact of uncertainty during his partner's pregnancy and its effects on his own mental health.
This episode discusses societal pressures on men, the mental toll of a loss in control and the positive impact of sharing how you feel about what you're going through.
You're not in it alone. If you would like to talk with someone that understands, please feel free to contact our Support Team.
Listen here: https://anchor.fm/softuk/episodes/Shauns-Story-The-importance-of-letting-it-out-for-dads-e10q79a/a-a5i7elm

NHS Digital Project: An introduction

SOFT UK is proud and excited to announce a collaborative project with the NHS, an introduction to which can be found in this podcast episode. We are working with Public Health England, NHS Digital and the Down’s Syndrome Association to create 2 films that will help families affected by Trisomy. These films will be widely distributed by the NHS and SOFT UK so are hugely important and will help so many families in their time of greatest need and uncertainty.
These films will be shaped by families with recent, lived experience of Trisomy. We are looking for a variety of experiences, ranging from pre-natal diagnosis, ending the pregnancy, to living with the condition.
Everyone’s experience could truly help to make a difference and support families during their early stages of learning about the condition, the support available, and options open to them.
The one thing we hear time and time again, is that families wish they had known more at the start of their journey. Both SOFT UK and the NHS are determined to offer that to families in the future, so by sharing your experience, you will be helping us to shape this vision.
Listen here: https://anchor.fm/softuk/episodes/SOFT-UK-NHS-Digital-Project-e10nsm7/a-a5hr8n0

Episode 7: Heidi

Click here to listen: https://anchor.fm/softuk/episodes/SOFT-UK-Family-Stories---Episode-7-Heidi-eqeh4q/a-a4l7arm

Episode 6: Laura

Click here to listen: https://anchor.fm/softuk/episodes/SOFT-UK-Family-Stories---Episode-6-Laura-eqeh12/a-a4l7ace

Episode 5: Larry

Click here to listen: https://anchor.fm/softuk/episodes/SOFT-UK-Family-Stories---Episode-5-Larry-eqegtg/a-a4l78ud

Episode 4: Kate

Click here to listen: https://anchor.fm/softuk/episodes/SOFT-UK-Family-Stories---Episode-4-Kate-eqegkt/a-a4l78aa

Episode 3: Simone

Click here to listen: https://anchor.fm/softuk/episodes/SOFT-UK-Family-Stories---Episode-3-Simone-eqeghd/a-a4l77m4

Episode 2: Jemima

Click here to listen: https://anchor.fm/softuk/episodes/SOFT-UK-Family-Stories---Episode-2-Jemima-eqeg6t/a-a4l75u0

Episode 1: Juliette

Click here to listen: https://anchor.fm/softuk/episodes/SOFT-UK-Family-Stories---Episode-1-Juliette-eqefve/a-a4l74i0

SOFT UK Family Stories - Introduction

Click here to listen: https://anchor.fm/softuk/episodes/SOFT-UK-Family-Stories---Introduction-eqa9oj/a-a4kb98d