When Ellie gave birth to twin boys Roman and Harley in March 2019, she and her partner Oli were delighted. But before long it became apparent that Roman, the elder twin was struggling and after tests, he was diagnosed with a life-threatening condition called Alagille syndrome. Alagille syndrome affects multiple organs, but in Roman, this was mainly his heart and liver.
Roman has pulmonary atresia as a result of his condition. Despite reaching out to doctors across the world, it became clear that Roman’s condition was incurable and that there was nothing they could do for him. When he was discharged from the hospital, Roman was only expected to live for weeks. But Roman has defied the odds. Here, Ellie tells us about Roman and the role of the Rennie Grove Children’s Hospice at Home team in helping them enjoy precious time together as a family in their own home.
“It is never easy to hear that there is something wrong with your baby and when we were told by doctors that Roman had one of the most complicated forms of pulmonary atresia they had ever seen, we were naturally devastated. However, despite having a major vessel missing, Roman’s heart has found its own way of carrying on for all these months. He’s a little miracle really”.
Support from the children’s hospice at home service
“When the doctors said they could do no more for us and they were discharging us, we were completely bewildered. We spent some time in a children’s hospice but after a few weeks we started to talk about coming home and that’s when we were introduced to the Rennie Grove and the children’s hospice at home service. They came to the hospice to meet us and talked about what needed to happen for us to be able to come home.
“The nurses just took over. They were here to support all of our needs – whatever the issue, they would sort it out. It’s not all been plain sailing as Roman’s condition is very changeable and he has had some very bad turns but the nurses were there to support us, whatever time of the day or night.
“I’ll never forget one night when Roman was having severe cardiac pain they came and sat with him all night, giving him the medication he needed to make him comfortable until a bed became available in the children’s hospice. I wouldn’t have known what to do without them”.
“The support has not just been for Roman though. The nurses have given total support to the whole family. It’s been really important for me to have someone to talk to. We found ourselves in the worst situation a family could be in and Rennie Grove was there for us. Other healthcare professionals have popped in and helped with specific bits of Roman’s care, but Rennie Grove made time for proper support for us all”.
“Whether it is practical nursing to help Roman through a crisis, coming to hospital appointments with us, or simply caring for him while I have some time with Harley, the support has been invaluable”.
Trying to live as normal a life
“We still don’t know how much time we will have with Roman and the time we are getting together is becoming more and more precious, we are just trying to live as normal a life as we can”.
“The children’s hospice at home service has helped us with this too. We wanted to take Roman to the seaside and the nurses were amazing at helping us get all the support we would need in place near where we would be staying so we could make this happen. It was a very special time”.
“I’ve also really enjoyed the coffee morning and play events arranged for the children cared for by Rennie Grove and their families. Meeting other parents in the same situation as us has really helped me feel much better – everyone there is in it together”.
“Oli and I were due to get married in October but in the end, we decided to postpone the wedding because Roman’s condition is just so unpredictable. It was a very hard decision to make and the nurses helped support us through this too – they even cared for Roman while we went to meet some of our guests who had been unable to change their flights from Australia”.
“I simply do not know what we would have done over the last few months without the help from Rennie Grove. Having this service on our doorstep has been a godsend for us. No family ever knows when they might need a service like this that goes above and beyond – we would not have coped without them.”