Rachel’s Story: Loving Liv and Living with Loss
When Olivia arrived on 6th June 2023, our lives felt complete. For three months, we lived in a happy bubble, enjoying life as a family of three.
When signs started to show that something might not be quite right, we spent seven agonising weeks in hospital, trying to understand what was happening to our little Liv.
We eventually learned that she had a life-debilitating genetic condition. One so rare that only a handful of children across the UK are born with it each year.
Overnight, we became carers for our little girl. But more than anything, we were completely committed to making her feel as loved and special as possible.
We learned how to administer the many medicines she needed throughout the day and night, how to feed her through her NG tube, and how to use medical equipment including suction machines and oxygen canisters, should they ever be needed.
With the ongoing support of the incredible Keech Hospice, we were finally allowed home.
At home, our focus became living as normal a life as possible and giving Liv experiences that other children get to enjoy.
We took her swimming.
We celebrated Bonfire Night and sparklers.
We saw Father Christmas and the Christmas lights.
We played with her endlessly and showered her with love.
Liv passed away peacefully just one week before she turned six months old.
We miss her terribly and talk about her every day, but we feel so blessed and lucky to have had her in our lives.
Trying to Conceive Again
After losing Liv, the thought of growing our family again came with both hope and fear.
We knew we needed answers about her condition before trying to conceive again. This led us through genetic testing, helping us understand the risks we faced.
From there, we began the emotionally and physically demanding journey of IVF with pre-implantation genetic testing (PGT-M), allowing embryos to be tested so that only those without the condition would be transferred.
We also created an embryo bank, giving us the best possible chance for the future.
It was a journey filled with appointments, waiting, uncertainty, and a constant mix of hope and anxiety. But it gave us something we desperately needed — a way forward.
Mother’s Day
I’ve always hated Mother’s Day since Liv passed away.
It brought feelings of jealousy towards other mums who had their children with them, and deep sadness as it became another stark reminder that Liv wasn’t here with me.
For a long time, I avoided social media completely. I also avoided going out, not wanting to see mums spending time with their children — a painful reminder of what I had lost.
Despite becoming a mum in 2023, this is the first Mother’s Day I will share with one of my children, Tilly.
While I’m looking forward to the day, I know it will be tinged with sadness, as Liv won’t be here with me.
How You Can Support Someone
Don’t shy away from the topic.
Not acknowledging what someone is going through can make them feel even more isolated and alone.
There was a time when I didn’t feel able to speak to anyone while I was coming to terms with everything that had happened.
Receiving a simple text saying “thinking of you”, with no expectation of a reply, meant the world.
A Self-Care Reminder
Be kind to yourself.
Don’t feel like you have to keep up appearances, be strong for everyone else, or carry on as though life is normal.
There is no prize for “coping well.”
Spend the whole day crying if you need to.
Cancel plans.
Allow yourself to feel the sadness, anger, numbness, and exhaustion, rather than trying to push it all away.
