Those parents have lost control over everything. They are grieving for what should have been and trying to adapt to a new ‘normal’. By reaching parents right at the beginning – while their babies are still in the neonatal unit – and providing good crisis support, we can show these mums and dads that they are not alone, that Julia’s House is there for them. We can help give them back some confidence and a growing sense of control over the things they feel they have lost.
Catching families early is critical. That first year with a very poorly child is the hardest. Once the baby is stabilised and able to go home, parents suddenly find themselves away from a hospital environment where help is at the end of a buzzer.
Often these children only reemerge a year or two later and by then families are in crisis. They will have struggled along with no support until they are at breaking point. Parents are sleep deprived and often the marriage is under strain. By reaching those families at the start a lot of heartbreak can be avoided.
Building strong relationships with local hospitals is a really important part of what I do. Educating other health professionals and making them aware of the services we offer is crucial – we need to break through the taboos.
I encourage nursing and medical staff to visit the hospice and see for themselves what a positive experience it is. I want them to be able to talk knowledgeably about Julia’s House so that they can share accurate information with families who might need our help.
When one mum I support was told that her poorly newborn baby ‘would probably end up at Julia’s House hospice’ she had a complete breakdown. Like most people she associated the word hospice with death and thought it was the nurse’s way of breaking the news that her baby was going to die. It was a terrible situation. I never want to see another young mum have to go through what she went through.
I avoid using the word hospice when I am talking to new parents. They might have a very poorly child, but it doesn’t have to be a hopeless situation. Julia’s House can give them so much: regular respite, family support and be there whenever they need to ask a question or just talk about something that is worrying them.
I want those parents to know all is not lost. With the right support they can still have a good family life. And that’s what is at the heart of Julia’s House – giving the children and families in our care the very best possible experience.
When parents have to make big decisions or need to talk or come to terms with a difficult situation, the thing they need most from you is your time – and that’s one of the best things a Julia’s House nurse can offer. There is nothing worse than rushing a mum who is already under pressure.
It feels like a real luxury for me to be able to spend time with children and families knowing that I am making a difference to the quality of all their lives.