The moment that will never leave me; the vision I will have every Christmas for evermore, is what I saw when we first walked into our room at Naomi House.
It was a winter wonderland – the most amazing, colourful, bright, festive room I have ever seen. Every wall, every surface filled with decorations and twinkling lights and a magnificent 8’ Christmas tree in the corner. All for us and our baby daughter, Emma.
Just 24 hours earlier – this was late October 2020 – we had been sat on our bed in the children’s intensive care unit in Southampton, talking to the doctors about what we wanted to do. We’d just had the results back of four days of tests. They had found that only two of the arteries to Emma’s tiny heart were working, and that she only had the effective use of half of one lung. There had been a scare at her 20-week scan and they were worried – but it seemed as though she’d got through that. When she was born in early August she was a small but perfect, beautiful, happy little girl; our first child. We took her home.
But there we were, just 10 weeks later, and they were sitting telling us, so calmly, so gently, that there was nothing more that could be done. Our daughter was being kept alive only by air flow and oxygen – and she would die soon after that was removed. She could have an operation – but it would be very traumatic and would give Emma only a few more months of life, at best, all on the ventilator.
We told them we didn’t want her to suffer, just to prolong her life. We said we wanted her to have the best life we could give her, however little time she had left. And that’s when we were introduced to Dr Kate – one of the two incredible Paediatric Palliative Care Consultants at Naomi House and Jacksplace. She told us that we could stay in the hospital if we liked, or we would be welcome to bring Emma to the children’s hospice.
We chose the hospice. Partly because Dr Kate made it sound just so lovely, partly because it meant Emma not having to go to the hospital morgue, and also because we were told that Emma’s grandparents and great-grandparents would be allowed to come and visit (the hospital was still having to really restrict visitors).
But what clinched it was when we talked to Dr Kate about Christmas. My husband Simon and I had so many plans and dreams for our new little family. We’d imagined all those special moments with our child, the times we remembered from when we were kids – and we’d already made plans for Emma’s first Christmas. So when Dr Kate said, “We can make Christmas happen for you,” that’s when we knew we had to go.
I won’t forget the journey there either. A special ambulance, driven by the loveliest paramedic, came to get us. He told us “I’ll look after all of you – don’t worry if the lights and sirens start going, that’s just to get us through traffic!” He placed Emma (who gave him the biggest smile, little flirt that she was) in this social life-support ‘pod’ (which Simon thought looked like something from a sci-fi movie) and we set off to the hospice.
And so that’s how we arrived at Naomi House, the most welcoming, warm, homely place you can imagine. We were greeted by smiling nurses who led us through to Emma’s winter wonderland room – and even though it was just a Friday in October, we began our ‘Christmas Day’.
Emma was taken off the oxygen air flow and I cuddled her – which I had hardly been able to do in the hospital. Christmas music was playing on a CD player. Our two families arrived, with the Christmas presents we’d asked them to buy for us. We had little gifts for Emma – and Emma had ‘bought’ a gift for each of us. A watch for Simon, a ring for me.
The day flew by. All the grandparents and great-grandparents came to see Emma, to give a little Christmas gift and to have a quick cuddle (my mum brought in our ‘family Christmas angel’, which was my grandmother’s – and that went on the top of the tree). The Naomi House nurses were just incredible, always there if we needed them, constantly checking on Emma and her breathing. And the food! They made sure that all of us had everything we could possibly want, without asking.
And they all made their own contributions to our ‘Christmas’ as well. The nurses all wore Christmas hats. Two lovely ladies made tiny Christmas crowns for Emma with what they found in the craft box, which we popped on her head. Another hand-made a Christmas tree decoration, with Emma’s name, to hang on the tree. We’d only met them less than a day before and yet they treated us like family we’d known all our lives.
Emma had an ‘episode’ in the night but, thankfully, she made it through. We decided that this was ‘Boxing Day’ and we spent the whole day with her, Simon and me, cuddling her, reading stories and singing songs. That evening was ‘New Year’s Eve’ and we watched the sun come up on Sunday – our ‘New Year’s Day’.
Emma had an ‘episode’ in the night but, thankfully, she made it through. We decided that this was ‘Boxing Day’ and we spent the whole day with her, Simon and me, cuddling her, reading stories and singing songs. That evening was ‘New Year’s Eve’ and we watched the sun come up on Sunday – our ‘New Year’s Day’.
Emma’s breathing was becoming weaker, her heart beating more slowly. The nurses were constantly with us, adjusting her medications to make sure she was not in pain. She stopped eating, but we gave her a little milk from a syringe, which she really liked. That evening I changed her nappy and held her again – and just felt a change. I called for Simon, who came running.
I remember the nurse coming into the room. She saw my face and she knew. She asked if we wanted to be alone and I said, “Yes, please.” You see, I’d always thought that when that moment came it would just be the three of us together; and it was. I told Emma, “It’s OK, you can go now.”
Naomi House continued to look after us for several days after Emma passed away, just as they had done for those three magical days. They put a cold mat in Emma’s Moses basket so she could stay in the room with us. They helped us to make plaster casts of her little hands and feet, which we were able to frame for our wall. They introduced us to the funeral director and helped us to choose all the things we wanted for her ceremony.
But it’s how they treated Emma that still amazes me. Each morning the nurses would come in and say “Hello!” to her, and chat to her while they fussed over her. They helped us to give her a bath (she loved baths!) and change her into her best clothes. One morning, one of the nurses told me that she’d gone in to see Emma in the middle of the night while we slept – and read her a story, because she thought Emma would have liked that.
The medical skill, the knowledge and experience are wonderful. But the human care is far, far beyond that. They put themselves out, everyone at Naomi House, to give us the best three days we could have possibly hoped for.
As you read this we’ll have just passed the first anniversary of her death. Honestly, I don’t think either Simon or I really know how we’ll feel this ‘actual’ Christmas. Last December didn’t really exist for us. We saw family on the day but there was no celebrating. I hope that, this year, when we can at last get together with family properly – we’ll be able to have a celebration for Emma.
We’ve decided we’re going to have ‘Emma’s Tree’ at Christmas. We’re going to decorate it with the decorations Naomi House gave us from those three days in her room. The angel my grandmother gave me will be on the top – and the decoration the nurse made especially for her will be right at the front.
I hope you don’t mind me opening up to you like this. I want to try and give you a picture of how utterly life-changing Naomi House’s care was for our family. It’s the care you pay for when you make a donation to this charity; a charity I didn’t even know existed until last October. Simon and I – and our whole family – have been raising money for Naomi House this year. I don’t think we’ll ever stop; they’re still helping us to this day with counselling.
Because if we can take anything positive from losing our daughter it will be, by telling her story, that we help to raise the money that will allow Naomi House to open their doors to another child. That’s another child from Hampshire, Wiltshire, Berkshire, Dorset, the Isle of Wight or beyond. This Christmas there will be many families at different stages of their own unique stories. The team at Naomi House (and Jacksplace for the older ones too) can give these precious life limited children the care they need – and create memories for their families – if they have our support.
I found out earlier this year that each hour of nursing care Emma received cost £22. A day of play activities, creating precious memories for families like ours costs £140. And over the Christmas holidays, £525 covers a whole 24 hours of expert nursing care.
Last year, people like you made the donations that allowed Emma and us to have Christmas at Naomi House. However much you can manage this year, you’ll be doing the same for another child. Simon and I will be very grateful for any contribution you feel you can make.
I hope this Christmas is everything you want it to be, spent with the people you love most. Thank you taking the time to read my letter, thank you for your donation and your words.
With all good wishes from Simon and me,
Deanne & Simon
