Like most parents, Josi and John were excited to find out they were expecting another child. They already had a son, Oskar, who was 1 and a half years old. This excitement was made even greater having had the devastating loss of their first born child, Minna, who was stillborn in 2015.
For a second time, John and Josi were left devastated and all their future plans for a family of 4 left up in the air when the 22 week scan diagnosed a rare heart condition – hypoplastic left heart syndrome. The Head of Cardiology explained everything clearly including that Jacob’s case was a particularly bad case, which was confirmed later in an MRI scan.
At this point, Josi and John were told about Demelza and arranged a visit. “The facilities looked amazing and everyone was so welcoming and kind” recalls Josi.
Jacob was born and the next 5 days felt like a blessing to the family. They had a naming and blessing ceremony a few days later at home. At this point the family were spending the days at home and evenings in Demelza as they were mostly concerned about night times.
“Arriving for the first time at Demelza with Jacob was surreal” remembers Josi.
“Everyone seemed to know who we were and after a very short time it felt like being at home while distant relatives tended our and Jacob's every need – they made us feel so comfortable and were attentive to every need. Jacob’s room had been prepared so thoughtfully in advance and they also accommodated some changes that we requested to make things even better – the care team and nurses were brilliant”.
Josi and John knew their time with Jacob was short so they had hand and footprints made as a family. Later that day, Jacob deteriorated rapidly and died shortly afterwards with both Josi and John beside him.
John recalls “we believe that Jacob had life to the full. He left this world as innocent and perfect as he entered it”
“Demelza was amazing – it’s such a special and loving place – I never knew these places existed but I can’t imagine what we would have done without them when we left hospital with Jacob. It’s like living with a specialist family member who supports you with the nursing and care – one nurse even stayed on way past her shift had finished as she said it wasn’t the right time to hand over”.
The Demelza care team was by the family’s side throughout. Demelza helped with memory making, offered help with funeral arrangements and arranged bereavement counselling. They supported the whole family, also helping to explain to the parents how their child Oskar would feel.
As a charity, Demelza Hospice Care for Children is almost entirely dependent on the generosity of our supporters to provide the funds that keep our services going. Please help up make sure every family and child can depend on us when they need us most.