Jen is a Noah’s Ark Children’s Hospice Midwife. Mothers are referred to Jen when their unborn baby is diagnosed with a life-threatening or life-limiting condition, helping them to navigate the distress, anxiety and the resulting medical interventions. Jen supports mothers from the start of their journey, advising them on important decisions about the future of their pregnancy and care options through to bereavement support at the end of their baby’s life. Jen is one of only five Hospice Midwives in the UK, offering expert guidance to expectant and new mothers in their darkest moments.
Jen says of her role: ‘Firstly I try and establish where the mother is in her journey and what their feelings and fears are, and try and work out how we can support with that. It might not be as obvious as going to a doctor’s appointment or a scan with them, which is obviously some of the things I can offer, but it also might just be going over what they’ve been told and what their understanding of that is.’
Jen reflects on the myriad of experiences these mothers have, saying: ‘I have looked after families where their only child sadly died, and other families where there are siblings. Your circumstances can greatly impact how you experience your grief. Some parents who have children have said that they can keep you going and functioning – even offering a distraction. When you haven’t got any other children that distraction isn’t there, so for some it can feel like you’re just sat in your grief.’
Another challenge that these mothers face is the loss of their identity as the baby’s main care giver. She says: ‘The amount of professionals involved in these babies lives can be very overwhelming and it can be really difficult to differentiate between all the professionals and try to understand who we are and what our role is. So, it can be confusing for the mothers I support.’
Jen also talks about ‘Rainbow Babies’, babies that are born after an older sibling has died, she says: ‘It’s very different as they have that knowledge base of what happened. So then when they go on to have another child, they may assume or at least fear that those things are going to repeat themselves. So, there’s a lot of anxiety around the new baby and making sure that everything is OK. Mothers of Rainbow Babies need support, empathy and most of all reassurance.’
Jen talks about how physically being pregnant impacts the mother’s emotional experience: ‘Regardless of their stage of pregnancy, mothers experience a wave of hormones that aid the bonding process. They can see their bodies changing as their baby grows and for some, they can physically feel their baby inside them. It is such a personal and intense experience even when the baby is healthy, so in my opinion to be a mother of a child who has an uncertain future can be incredibly hard, because the bond between a mother and her baby can be really strong, even before birth.’
You can read more about Jen’s role at Noah’s Ark Children’s Hospice here – https://www.nursingtimes.net/end-of-life-and-palliative-care/spotlighting-the-emerging-role-of-the-hospice-midwife-18-02-2025/