We met and chatted to seven different student doctors during our hospital stay.
The two consultants who asked if it would be okay for us to chat to them about Hermione's current illness, and then her diagnosis of Down Syndrome, were refreshingly positive and enthusiastic about our advocacy for our life with Hermione.
The first morning, I'd barely had any sleep, hadn't washed, and I was waiting for Danny to come back from A&E, as he fell ill whilst we were in hospital too (he is okay now by the way!).
I was really hoping I could chat confidently about Hermione, as I didn't feel very focused and felt like a complete mess. Our things were strewn all over the room, Hermione was wiping snot on me, and I hadn't even brushed my teeth that day 😆🙈. My confidence felt at an all time low!
But despite this, it felt satisfying that I did manage to talk to the first group of doctors.
I was happy to explain that Hermione is first and foremost a much-loved daughter, sister, granddaughter, niece and cousin, and that the way Down Syndrome is presented at prognosis/diagnosis does not always match the lived experience of many people who care for and love someone with DS.
As doctors of the future, I was hoping that they could see beyond the textbook and beyond the list of possible health issues, or 'features' of Down Syndrome.
I know it is necessary to learn about initially, but for me, the human aspect of a true experience is hopefully the thing that will change attitudes within society and the medical community.
The second consultant brought round another four doctors a couple of days later, and we talked about the language used around Down Syndrome, and the very real fact that still now, 90% of pregnancies where there is a high chance of DS are not continued.
We talked about the fact that 'risk' in pregnancy has been changed to 'chance' much to our relief; and the consultant nodded vehemently, and took this point up with the students, which was great to see.
We could see that these details were now being very much discussed and considered in how this can flavour a general attitude towards Down Syndrome as a whole.
Obviously I told them that we never considered Hermione to be a 'risk.'
A different life maybe, but not a risk.
And we were honest about the challenges we face, because that is a reality. We tried to emphasise that every child with DS is different, although there are some commonalities, and that with the right support, each child can thrive in their own way.
But we do need continued research and investment into how best to work with and support people with DS. I did mention that there is a disproportionate amount of investment into screening tools to find out if a pregnancy may have a higher likelihood of DS, compared to the investment into ways to help people with DS to live and thrive.
At the end of the chat, one of the student doctors asked if she could examine Hermione and listen to her chest.
We were honest and said that she does find this difficult, but she was welcome to try.
She asked us what was 'Hello Hermione' in Makaton, and we showed her and so she greeted her this way. She was brilliant!
Much to our astonishment, Hermione actually held the stethoscope to her chest, as if to say, 'yes, I know where this goes,' 😆. I think being in hospital for a fair few days got her accustomed to the checks she was having regularly!
I also think that greeting her in a way she understood went a long way in building trust 😊. And that there is one way to invest. It's not only money, but emotions, skills and time too.
As they left, Hermione signed 'bye bye' and 'thank you' and it was lovely to see the consultant and students smiling and seeing first hand how Hermione enhances the world.
It felt good that, even in the midst of the worry, tiredness and the anxious nature of a hospital stay, we could still advocate when we got the chance.
We hope that when one of the future doctors has an encounter with a child, adult or a pregnancy with a likelihood of DS, that their positive meeting with Hermione would flavour how they deal with that situation.
Changing the world, step-by-step, in our own small ways.
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