As part of Baby Loss Awareness Week, we’re sharing stories from families who’ve faced the heartbreak of baby loss. In her story, Josie speaks about the importance of making memories when a baby’s life will be short.
Josie was 34 weeks pregnant when her life changed forever. She and her partner, Ben, were attending an antenatal scan, brimming with joy and excitement for the future. They already knew their daughter could have health challenges from a previous scan, but they were not expecting the news they were given that day. Their unborn daughter, Billy-Rose, had hydranencephaly, a life-limiting condition where the brain doesn’t form fully.
Following their appointment, the couple faced an anxious wait at the hospital for the results of their scan. It was during that wait that Josie’s life would change beyond recognition. At the hospital, her partner Ben suffered a fit and hit his head, causing an injury he would never recover from. He died a week later, seven weeks before Billy Rose was born.
Faced with the loss of her partner, and the likelihood that her child would have a short life, Josie decided to continue with her pregnancy, despite some professionals seeing termination as her only option. She describes it as “an incredibly isolating moment – I was totally lost at sea, alone in the middle of a huge field– and I felt like a freak for wanting to have my baby.”
Fortunately, Josie found a paediatrician who understood why Josie would want to continue her pregnancy and meet her baby. She says that it was at this point when she “started to feel more supported and that her baby’s life mattered.”
Josie was supported to continue her pregnancy, and gave birth to Billy-Rose, who lived a full but short life, dying after six months.
Josie reflects on the time they had together, describing it as their “baby love bubble”.
Billy-Rose taught me to be in the moment, she taught me how to fightJosie
“I had a wonderful opportunity to give my daughter what she needed – to see the sunshine and put her feet on the green grass. Having Billy-Rose was a joyous time – I was euphoric and in love – but I knew every moment would be short lived. I’d worked with disabled children when I first left school so I knew a little bit about what people’s attitudes could be to disabled children. I also knew how much children can bring to humanity. Billy-Rose taught me to be in the moment, she taught me how to fight.”
Josie also speaks about the way having a seriously ill baby changed the way other people saw her. She was initiated into a group she’d never expected to be part of, “a hidden world” – a small club that nobody wants to join.”
Reflecting on her experience, she says, “If only I’d been told about Together for Short Lives then or been given a copy of your Perinatal Care Pathway. Once I started to read other family stories on Together for Short Lives’ website, I realised that I wasn’t alone or a freak – and support was out there.”
Nowadays, Josie spends her time helping other families going through a similar experience. “Doing something positive helps cushion my sadness. I miss Billy-Rose and Ben so much but I have to go forward or I would crumple.
She’s spoken at Together for Short Lives’ conferences; written about her experiences for Children’s Hospice South West, a local children’s hospice that cared for Billy-Rose during her short life; and she’s contributed to Lives Worth Living, a collection of stories by mothers who have children with life-limiting conditions.
“When I have dark days I remember the baby love bubble we had together and when I look at photos I get that rush of love for the time we had together.”
If you’ve experienced baby loss and need support, you’re not alone. There’s support out there for you, to give you the space you need to grieve, heal and remember. The SANDs helpline provides a safe and confidential space for those affected by the death of a baby, no matter how recent or long ago.