Roman’s Story

At only a few days old, Roman was diagnosed with Alagilles Syndrome, a rare genetic condition that can cause various complications. For Roman, it affected his heart (pulmonary atresia). This meant he had no pulmonary artery and his liver didn’t function. After a few weeks in hospital for tests, they couldn’t do any more for him. This was when, in March 2019, Roman and his family came to Helen & Douglas House.

Roman needed the hospice’s emergency medical care, and his exhausted family, after spending weeks by his side in hospital, needed emotional and practical support. Parents Ellie and Oli came to stay at the children’s hospice with twin brother Harley, Grandma Wendy and Nanna Fran.

When Roman went home, he continued to be supported and cared for by our incredible medical and outreach teams. On several occasions, he was also admitted back to the hospice, for both emergency and planned care. Roman went on to live for over nine months until, in January 2020, he peacefully died at home, just a few weeks after his first and last Christmas.

Once again, we were there to support his whole family with bereavement care when they needed it the most. Roman stayed in the hospice’s special air-conditioned room, without monitors or tubes, so his family could take the time they needed to privately say their goodbyes to their precious baby boy.

“Our son was given just weeks to live. After a few exhausting weeks between various hospitals, we were referred to the hospice. The word hospice felt scary to us. But, as soon as we walked in through their doors, we felt a huge relief.”

“Roman got the vital lifeline of emergency care that he needed from the incredible nurses and doctors of Helen & Douglas House. And, as a family, we could start to recover and spend time with his healthy twin, Harley. Later we learnt how to care for Roman in his delicate condition until we were able to all go home together.” 

Roman’s mum, Ellie.