Basically Matilda was palliative care from she was five days old. It was 10 to 5 in the afternoon on a Thursday and the consultant said, ‘your little girl has a very serious condition, it’s called Edwards Syndrome, Trisomy 18’. And my husband and I immediately began to cry because she definitely had a diagnosis of something. I had never heard of Edwards Syndrome or Trisomy 18 before even though I work with little ones with special needs and would be familiar with conditions, various conditions.
When a nurse was nursing Matilda in the neo-natal unit I would ask each one, ‘have you heard of Trisomy 18, have you heard of Edwards Syndrome?’ Some had and some hadn’t really. Some had nursed a little one with the condition and others hadn’t. I remember one nurse and when I asked her, she said ‘yes, I nursed a little one at home’. My eyes just sort of lit up, my ears pricked ‘at home? Wow’ and she said ‘yes’ and I said ‘how long did the little baby live?’ and she said, well two weeks in hospital and then two weeks at home.
You know, how life changes in terms of perspectives, wow, she had, that baby had an equal amount of time at home and here, that’s so amazing. And the nurse said ‘yes, so if you think that you can go home, just you say, we want to go home’. When we said this we were then told about a service called hospice at home and that hospice at home nurses could come out potentially and give some respite to us. We didn’t know how much we would be getting, how often, day or night, but to just know that they were there, gave us confidence and a calmness that, okay if something happens we know who to call.
We then did, we took Matilda home on her two week birthday. So to actually walk through the front door with a baby who was alive felt like we had climbed Everest and that she had climbed Everest. When hospice at home came out in the evening, or at night, they came from 10 at night until 7 in the morning and that meant that Kris and I could go to bed at the same time and get up at the same time and therefore have the whole day together with Matilda as a little family. And we could actually then take her out, if she was well enough, if she wasn’t well enough we didn’t take her out. So she had lots and lots of adventures and hospice at home made a lot of those possible.
It would be helpful to know maybe, ok you’ll get one night cover a week or two nights a week or two a month, just so that you can sort of plan and families can think in their heads, yes, you know, that’s manageable for us, versus how will we manage. Every room in our house there’s a piece of Matilda’s art work and also they would have put her name on it. That meant so much and on the back it said, made by Matilda and the date and I always wrote what age she was too. Again, you know, that’s something so normal, that children bring home their paintings from nursery, that’s something that little ones like our little Matilda aren’t going to have that experience and we are not going to have that, but actually having something physical means so much, and because we had never been in that situation before, as most people won’t have been. It meant so much that the hospice nurses had that awareness but didn’t push it in a way of, you know, these will be really useful afterwards, because we didn’t really want to think about afterwards.
It was more about; oh wouldn’t it be lovely for Matilda to do painting now. We always sponsor the children’s hospice and write on it, ‘This is in memory of Matilda Margaret Ruth Gray to thank you all so much for making her life more lovely’ because that is what they did, they made her life more lovely.