Creating a mindfulness app to support other parents through baby loss

Lucy, 32, is a mental health nurse and mindfulness teacher based in Manchester. She lives with her husband, Richard, and 2 rainbow babies, Noah and Isaac. After losing her daughter, Ellie, to a termination for medical reasons (TFMR), Lucy decided to create a mindfulness app and resources to support other parents through baby loss.

Baby loss was one of those things that I knew happened, but it wasn’t something I gave much thought to, as it was never my reality. Little did I know that I would be part of that world, and that my journey would change the lives of others, too.

In 2017, we got pregnant with our daughter, Ellie. Our pregnancy up until the 20-week scan was normal. We had done a birth relaxation course and we felt excited. 

After our 20-week scan, we were sent for further testing as I have a heart problem. This was just to ensure Ellie’s heart was okay.

Receiving the awful news

At the end of the appointment, we were asked to sit down in one of those bad news hospital rooms. I knew it was one of those rooms as I had found myself sat in the same room with my parents in 2004, when the doctor came in to tell us my twin brother had died when we were 15. It took me back there in my mind, and I remember listening to the consultant but not really engaging with his words.

The consultant explained that what they could see there was a problem with our daughter’s heart and that it had not formed properly. He then said that, at this point, he wasn’t sure how compatible with life she would be – but it wasn’t looking great. 

We were devastated

We left the hospital broken. I remember driving back and the sky was completely overcast, then the clouds broke and it started to rain. It was like the world cried for us that day – and my god did we feel its pain. The following weeks were a rollercoaster. We were sent for further testing; one moment there was hope then that hope was shattered. The constant up and down of emotion was exhausting. 

After a tiring 3 weeks of not knowing what our outlook was, we were finally told that the severity of Ellie’s condition meant that she would not survive after birth. We were given the option to continue to full term with the pregnancy or to have a termination for medical reasons, which meant ending the pregnancy at 23 weeks.

We wanted to mark Ellie’s birth 

We both decided that, even though we were heartbroken that our pregnancy was coming to an end, we still wanted to honour Ellie’s death and make her birth something we would remember. We chose to take forward all the relaxation techniques we’d learnt like we’d planned.  

The drive to the hospital was sad. We knew that this was our last journey together as a family. I could feel Ellie moving around inside my tummy and I held my belly. I didn’t want to let her go but I knew that it was me that was keeping her alive. My body was her life support, and this life support was soon to be switched off.

Ellie was born on 12 May, surrounded by the love of her parents.

Taking some time off work 

I decided to take some time off sick as I worked as a nurse for a community mental health team then, and I just knew I couldn’t go back to that role which involved working with people who were in a vulnerable mental state. I decided to take some time out of the NHS and set up a wellness business – Relax With Lucy & Co. I had been fortunate to complete training over the years in Acupuncture, Massage, Meditation and Reiki, and I wanted to use these skills to help others while I helped myself to get back on track.

I also decided to train to teach hypnobirthing in Ellie’s memory, as I felt so empowered following her birth to help others. So, for some years after Ellie’s death, I worked to help other couples to deliver babies in a relaxed way.

I wanted to support parents whose babies had passed away

However, I kept being pulled back to the fact that there are many families who have to deliver babies who have passed away, without any guidance from a holistic point of view. I knew I wanted to change this.

I had no idea what I would come up with, but I knew this would be Ellie’s gift to the world. Once I obtained some funding, I set about creating something. I wanted to use what had helped me and put it into a kind of tool that families could use when their baby had died. 

This is how the Ellie’s Gift App was born

The Ellie’s Gift App encourages techniques which promote comfort and relaxation, aiming to reduce anxiety during the birth of a baby that has died. It has quick tutorial videos to help teach families simple relaxation techniques that can help them cope with or prepare for a loss. It has downloadable mp3 tracks and resource tools, such as baby loss birth plans and what to pack in your hospital bag checklist.

Having completed mindfulness training over the last 4 years, I am now offering specialist relaxation and meditation mp3s and videos for free to our baby loss community. I’m also working collaboratively with many different organizations to get my message out there, so that I can continue supporting as many parents as possible through baby loss.

I see my work as the continuation of Ellie’s little life. Her life has been short, but her legacy remains, and she will go on to touch so many lives.

This is Ellie’s Gift to the world.

The Ellie’s Gift app is available to download from the Google Play Store. You can also access Lucy’s free meditation recordings by downloading the Insight Timer app and searching Lucy Livesey.