Over the past few years, we’ve seen an increase in the demand for our end-of-life and emergency support services for neonatal babies – babies 4 weeks old or younger. Because of this, in 2023 we created a new role specifically for palliative care support for babies, bringing Jemma on board as our Neonatal Palliative Care Clinical Nurse Specialist.
Jemma’s role is to support families of neonatal babies whose future might be uncertain. These are babies who may have a life-shortening condition which was unexpected, or the families may have learnt that there could be complications before their baby was born.
“I meet families at a highly emotional time where things are uncertain. They’re in crisis.”
Jemma says her working days are all very different. “I can be pulled here and there if it’s urgent!”
“I have a set day at each of the level 3 neonatal units in Swansea, Newport and Cardiff. I join the ward rounds where I can so that I’m a presence on the unit, getting families used to seeing someone from Tŷ Hafan and not being scared about what that means. They don’t know what is going to happen next, if their baby is going to survive or end up with a life-shortening condition.”
Joining the ward rounds gives Jemma the opportunity to see if any of the babies and their families could be referred to Tŷ Hafan for support. “If there are any referrals, I explain Tŷ Hafan, my role and the support available. I also use this time to check in on families who have been referred and get an update on their baby.”
When Jemma isn’t on neonatal wards, she can be supporting parents who are expecting a baby with an uncertain future. “I support them leading up to the birth and help them plan for the birth and beyond.” This could also mean bringing in our Family Support Practitioners for memory making and other services, depending on the family’s needs and wants.
If a family chooses to come to Tŷ Hafan with their baby for end-of-life care, Jemma helps to make this happen. “I’ll organise the transfer from the hospital, make sure the parents understand what will happen and take time to understand their wishes alongside our Family Support Practitioners. I liaise with both the teams on the neonatal ward and at Tŷ Hafan to get everything ready.”
Jemma joined Tŷ Hafan after working for 14 years on neonatal units herself. “What I like about being at Tŷ Hafan is you can provide a lot of support for the families, not just for parents but siblings and the rest of the family too. Hospitals do the best with what they’ve got, but to be able to offer them to get out of the hospital and get outside with their baby at Tŷ Hafan, if that’s what they want, is great.
“Everyone who works here, especially in those moments of end-of-life care, shows so much compassion and aims to give them the best experience that they can have in those circumstances.”
Jemma also helps with ‘parallel planning’. Jemma will support families in deciding what they want to do if their baby dies, for example, having end-of-life care at home or at our hospice, but also having an alternative plan in place so that the family has the support they need to take their baby home if they do survive.
Having the support and options can make a huge difference to a family whose baby has an uncertain future. They’ve got options with Tŷ Hafan and importantly, the support extends beyond the death of the child and bereavement.
Medical advancements mean that babies who are born very prematurely or with complex health conditions are living longer. Jemma’s role is a crucial one at Tŷ Hafan, making sure that families know what their options are and have the support they need when their baby comes to the end of their life.
Learn more about career opportunities at Tŷ Hafan.