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Perspectives on Paediatric Palliative Care through Yuri’s Story

Baby Yuri

‘We are grateful to Yuri’s family, the EAPC Children & Young People’s Reference Group for allowing us to share Yuri’s Story.  If you would like to learn more about palliative care for babies, see our latest enhanced e-learning modules on Neonatal Palliative Care HERE. Short biography of Yuri After an uneventful pregnancy, in the third trimester, Rebecca and Daniel were told that their baby had a diagnosis of a very complex, rare illness. Initially, they were given two options: the termination of the pregnancy,  or a highly-intensive treatment with a very high risk of mortality. However, they asked for a third option – that of letting nature take its course, in other words, palliative/comfort care. The options were discussed by the hospital ethics board and Rebecca and Daniel were referred to a specialised paediatric palliative care (PPC) team. Their baby’s birth took place at the tertiary centre and then, after a couple of days in the neonatal unit, they took their baby Yuri home, and care was provided by homecare nurses, the PPC team (medical, nursing, psychologist, social worker), the midwife and a bereavement care team. Thanks to clear advance care planning, transition to care at home from the hospital was facilitated within two hours. Yuri lived for 17 days and died at home peacefully in the presence of his family. Interview Thank you very much for taking the time for this interview. We would like to explore the meaning of paediatric palliative care for you, Rebecca and Daniel, as parents of Yuri, and his grandmother, Olivia. Rebecca, can you share with us a special moment with your son? Actually every moment was special and beautiful. Everything was equally beautiful. Especially, leaving the hospital, when there was a rainbow in the sky along with the moment that we entered our home together with Yuri. Having the normal experience of going home with our baby was the most beautiful moment for us, because, from then on, we were home with him. Daniel, what would you like to share with us – what was a particularly beautiful moment for you with Yuri? As a father, the bond is much stronger once you are holding your child in your own arms. As Rebecca said, every moment was beautiful, but when I was able to hold him in my arms for the first time, I really realised what it means to be parent of such a little person. Going home and experiencing daily life with him, such as walking to the village shop, strolling along the lake, showing him the garden, were also very beautiful moments we could share with him. We are indescribably grateful to the paediatric palliative care team that enabled us to experience this. If we had chosen one of the other two pathways, we could never have experienced this. Olivia, how do you remember your grandson? For me, he is like the most beautiful flower in the garden, a flower with a warm colour, like a sunflower with a strong radiance. To see how this flower grows, blooms and disappears again. That is my memory in a symbolic language. Other memories of Yuri are of him holding up his hand in his unique way, so powerful. Next, his charisma, his eyes, his gaze and the calm he exuded. That will stay with me forever and is what I remember the most. The support of the paediatric palliative care team started even before your son was born and continues to this day. How did you experience that and what significance does it have in retrospect? Daniel: It was like being in a cloud and not knowing where to go. As soon as the palliative care team became involved, we felt we were in good hands and were shown a path to walk on again. That was so valuable for us. The phase up until then was almost the worst of all, even though we knew Yuri was going to die, the uncertainty of what was going to happen was just about the worst. It was only once the paediatric palliative care team were there to support us, that we felt at ease and knew we could take the path that we felt was best for our son. It is very important to me that this kind of support exists, it is incredible. Throughout the whole time, so many skilled healthcare professionals were involved and have helped us so much. How did you experience developing a palliative birth plan, which included various options, including the option to go home after delivery to care for Yuri? Rebecca:  The birth plan was great. As a layperson, you are not familiar with this topic at all. We had no idea what was to come. With the paediatric palliative care option, we had a safe haven where we worked out a path together. All options, literally all, were on the birth plan, so we knew what would happen and in which scenario. It gave us a lot of security, because of the birth plan, but also because we knew the experienced paediatric palliative team was there for support. I also loved the fact that going home with our son was mentioned as an option, even though we both said before the birth of Yuri that it was not an option for us. However, with our permission, you made the necessary preparations anyway and didn’t just remove it from the plan. What ultimately triggered the decision to quickly go home with your child? Rebecca: Yuri was having a weak moment, was restless and had a bit of a fever, and the neonatal nurse was talking about Yuri leaving us at some point. We both had the same impulse: we had to take Yuri home immediately – it was inconceivable to us that Yuri would only get to know the hospital. We are so grateful for this moment, which prompted us to make this decision. How did you experience the collaboration between the teams (midwives, nursing, medical from

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